The solution for the kid with the special skin condition was surprisingly wholesome, props to the mother for being able to come up with a solution who benefits everyone, especially the kid and the little fish even in desperate times for her.
I make soap and I had a customer who was always buying my soap with loofa in it, the soap also had a high glycerin content. When I asked why she always bought that soap she explained that her hubby had ichthyosis and the soap was the only thing that helped. It was better than the prescription stuff they had used. If I run into her again I will have to find out if she has ever heard of the method this boy's mother used.
@@rustynails8756 Hey, that'd be awesome 😍 Lots of faith in humanity restored on my end today -That mom being able to come up with a good solution for everyone while probably super stressed out -Dr Mike's channel always advocating for a good cause spreading this kind of info -You doing this I needed this today 😌
@@rustynails8756 I hope you meet her again so you can give her the advice. It would be great if it made a meaningful chance in the man's quality of life.
Absolutely! I immediately thought wow, what a creative and fantastic idea! Kudos to this mom, this is genius. I am seriously impressed. Having watched documentaries about the sisters with ichthyosis, they showed how painful it is to scrub off the dead skin... It's amazing that there's a different solution.
“I go for walks whenever I have time” It really highlights that we really take so much for granted in life. People who can’t go out and enjoy the sun on their skin, who can’t walk for one reason or another, who have differences that many shun them for… so many of us are blessed to be able to just live life and do little things without much thought or preparation
I met a little girl while out shopping who had XP and was wearing the protective gear. I told her how cool she looked when her mom told me of her condition. I had originally presumed it was because of the pandemic. I'll never forget the high five and smile her mother gave her after our interaction. Kindness costs nothing, and I'm glad I met them. The lady with hyperextension I've seen before. There was a Victorian/Edwardian side show performer, Ella Harper, with the same thing. She was billed as the Camel Girl.
I had a physician like that, who'd refuse to listen to me because I was a teen and well, HE had a diploma, so he'd left me under medication that made me sicker and ruined my high school because I would miss half of the morning class, because I'd pass out after taking my meds lol. But it's okay, I didn't know how my meds affect me, I was just a dumb teen. Then the next doctor was as comprehensive and useful. She's the one who told my mom that "cancer isn't that bad, everyone gets one sooner or later and it's fine" because she's a survivor??? Like wtf are you on, lady. Back then my mom had to undergo a PET scan to check some unusual results, and she was worried af. Needless to say, being told that didn't help her feel better a second. 😐 My current physician is absolutely delightful, though. He cares, listens to his patients and actually tries to work things out with us. He's open-minded and when my mom, who's fibromyalgic and has multiple chronic pains, told him she was taking therapeutic CBD, he said it was a good idea and encouraged her to do so if it helped. I'm also kind of a nerd and likes reading medical stuff, and when the one time I was searching online for a possible condition of mine and went to see him about it, he listened and never dismissed what I said or was thinking because ngl, "I have no diploma and the internet is no medicine school". Turns out I was right about it, so I actually us both saved time- 😂
I have ichthyosis. Not as extreme as Raphael's case. But, I found that swimming was a great solution. Being in the water softened the skin to allow me to exfoliate afterwards. And it was a great way to be active. And actually be an athlete. Which helped me socialize and come out of my shell. No pun intended
@@foolishlyfoolhardy6004what is cruel? These are specific types of fish that eat meat. They are carnivorous .They're not starving, they've been used for hundreds and hundreds of years for this type of purpose. I can't even understand how you would get your brain to where you got it on this topic. Saltwater wouldn't do anything different for this kid than regular water. The fish are literally eating the hyperkeratosis off of his body each day allowing him to move freely and not be in pain. And you're worried about fish who might be hungry. Do you think these people are not changing the fish water? Are you really that dense?
I have a very mild form of it too, my skin always itches but I can manage it relatively well with some skin care and exfoliating all parts of my body. Especially my legs and arms are bad. My mom has psoriasis so at least she knew how to handle a condition like that and I was slathered in oil regularly. Her psoriasis has stopped showing up for about 20 years now since her menopause started because that condition really is a lot more influenced by hormones than mine.
Seeing how the surgeons changed that girl's life and how she looked so happy about being able to walk normally again truly warmed my heart. Not only that but also how moving these life changing events happen is truly a miracle.
I 100% agree that we need to change the names of so many of these diseases! Hopefully this is something you continue advocating for more on your platform!
As mean as some of the name sounds, it does describe what the disease is. Ichthyosis isn't exactly common knowledge but everyone knows what fish's skin looks like or what a werewolf is.
I remember my cousin getting a lot of judgemental stares for her "puffy" baby. They thought she was overfeeding him and he was an obese baby, but in truth it was caused by steroids and other medications for his infant seizures.
I have EDS. I am so, so grateful for any media coverage of it. 15 years ago when I was first diagnosed, barely anyone knew about it. It took me 20 years of severe, debilitating pain and sickness to get a proper diagnosis. Thank you Doctor Mike for talking about it.
I can’t imagine waiting so long for a diagnosis, I’ve been diagnosed with EDS and it’s‘buddies’ this year. And was lucky enough to only have a few people refuse something was their. ❤
I have the vascular type and wish people would talk about it bc it’s such a scary and deadly illness… I always hear “at least it’s not cancer” but I’d argue it’s just as bad, sometimes worse bc there are no cures, there’s not even a treatment so lessen it’s effects and your body betrays you even when you’re not doing anything… I ruptured my liver leaning on a table in school. I perforated my colon rolling over in my bed while asleep…
I used to work in a group home where one of the individuals living there had spastic quadriplegia. She was absolutely ripped because her muscles were always contracting and she had very little control of them. When I started working other staff told me that she used to have a 12 pack, but once she started a couple of medications it helped the spasms.
@@foolishlyfoolhardy6004 My man, you do realized that was caused by, oh i don't know, the fact that it was public? Of course there's gonna be a lot of things running around, and bad things could highly happen, yeahh... But like, come on, it was obvious it was made for him, *and him only*, meaning they have a lot more control than the one advertised for public use. And yes most of the infection happen because of other human that used the tank full of the fish rather than the fish itself.... Ps. English is not my first language, so I'm sorry if there's Gramatical mistake. Thx
@@foolishlyfoolhardy6004it’s likely that they have a method for sanitizing the environment he submerged in and keeping it separate from the fish habitat. Also he may be at a higher risk of infection without the fish treatment because more dry skin increases the chance of cracks forming in the skin.
Thank you Doctor Mike for talking about social acceptance for a moment. I used to be bullied in school for wearing hearing aids (i was the only one who had them) until i found a lot of good people who became good friends with me and taught me there were accepting people in this world
thank you for shedding light on such rare diseases. You are always open to learning new things and not afraid of admitting something you don’t know. Don’t change 💕
It's interesting because I'm only in my second week of medical school and have already learned about ehlers danlos in great detail, it's one of the first diseases we learn about. And it's in study materials for national board exams, so I know all doctors in the US have to learn about it. Maybe they forget?
Your empathy that you express towards these delicate medical cases,just shows the type of man and amazing caring doctor you are.Truly admire these qualities of you.Thanks 🤗
But it must feel amazing to walk normally again... to be able to just, decide to go for a walk. I have no cartilage left in either knee... and the left one routinely subluxates and sometimes even the femur telescops down between the tib & fib. I haven't done stairs normally for almost 23 years... when I was first diagnosed with early onset OA at age 14 after triple spraining my knee. They refused to do surgery for so long because I was too young... and now they refuse me because of my weight... which I gained from not being able to exercise anymore or even take a simple walk without oral steroids. I'd put up with any pain to walk normally again... goodness knows I'm in enough pain everyday already.
@@hosamhamdi819 Thank you. I am doing well. I have two wonderful scars down each knee. I can't cross my legs at the ankles when sitting. I have no flexibility in my knees. I am still afraid of stairs.
Mazel tov on getting new knees, and OOF on the recovery pain. I'm 2 1/2 weeks post-op (medical implant replacement) right now, and it's driving me nuts. The itching is gonna kill me, and I'm eating, like, twice what I normally do because my body won't stop demanding nutrients to heal this stupid 10cm/4" gash. Nobody talks about being ravenous after surgery, but it's real!
We take for granted being "normal". We complain about the most miniscule things on our body. Nothing but love to anybody going through these tough conditions
@@Legendary_Starlight Gotta check a few worlds a couple of time, English isn't my mother tongue. 'Glad you still was able to understand. I hope my little brain will remember your in put.
i have a rare form of muscular dystrophy and the doctor at 1:14 was my paediatric neuromuscular consultant for my entire childhood, dr neil thomas!! so crazy seeing him pop up on a dr mike video!
I love how compassionate and caring you are towards all kind of disorders and illnesses and never judgemental. And the way you decrypt a situation from both patient’s and doctor’s POV is just something that’s commendable. Have been following you for a long time for this quality content. Peewoop!!
New Dr Mike video yess!!! I love hearing + learning about new conditions! I live with ehlers Danlos syndrome and a slew of other conditions and it means the world seeing a Dr with such a big audience raise awareness for illnesses that most have never even heard of/seen before!! ❤️ it’s so so appreciated by the spoonie/chronic illness/disability community! 👏🏼✨ my fav Dr on the internet
I'm a physiotherapist from India..I enjoyed watching all these, especially the last case with multiple bony corrective surgeries. Thank you for mentioning about rehabilitation, as sometimes our work is not given enough importance. Post surgical rehab is an important component of overall recovery. Thank you❤
I have vascular ehlers danlos syndrome and would love to share my story… gravity is an enemy, my own organs are enemies, it’s a cruel disease that has you anxious 24/7 and there’s no cure. For example, I ruptured my liver leaning on a table, i perforated my colon rolling over in bed. The blood vessels in my legs will rip and rupture simply from gravity. Please highlight this subtype of ehlers danlos syndrome, it doesn’t have any awareness in media or online. It’s debilitating and I consider it a terminal genetic illness bc my life expectancy is 48.
I've only ever seen people speaking about their experience with hypermobile Ehlers-Danlos. I didn't know how terrifying the vascular form was until I read this comment. Thank you for sharing. I stand with you, friend.
@maayanstern9050, that's because vEDS is incredibly rare! There's simply not many people that have it, so it's much less prevalent on social media. I have aEDS, an even rarer (although much less dangerous) subtype of EDS, I never even heard of anyone else having it. In my opinion newborns should be screened for vEDS, as it's so dangerous. All subtypes of EDS can be deadly, but vEDS is on a whole other level. *Edit: aEDS has been described in literature 27 times and distinguishes itself from other subtypes by congenital bilateral hip dislocation and, if tested, a distinct mutation.
make this a mini series. want to see more of this from and with you. and add more of these rare medical cases from you or your medical friends. its like movie theater - totally amazing to hear.
I loved the last condition of the video. So much respect for her learning to function and do what she did with her condition. But the most amazing thing of it was her smile at the end as she was just walking in the rain. I am so happy for her that she got the help to get her to this point ❤
The last story is making me tear up, god bless the charity that offered to pay for her surgeries. I hope she loves her new freedom and that she lives a happy, pain free life!
What I got from this, is there are a lot of things that are of "utmost importance". Thank you Dr Mike for drawing attention to some of these rare cases and pointing out the importance of empathy as well as science.
I had Pseudotumor Cerebri in 2007 when I was like 12. They told me I had 24 hours to live before my optic nerve exploded and killed me. So they rushed me into an emergency spinal tap and had an insane amount of spinal fluid come out. Dr said he never heard of that much coming out. I heard it was a very rare condition. My eyes crossed, arms and legs were numb, WORST headache/neck pain of my entire life, and couldn’t walk. Found out when I was 18 that I had Lyme Disease my whole life that probably caused it. (My mom got bit by a tic when she was pregnant with me so we both have Lyme Disease). It was so scary tho. I even called my friends at school and told them goodbye and asked my best friend to get in my locker and get my boyfriends jacket and to give it back to him.
Lyme definitely needs to be more tested for. It is so often overlooked as a possibility. I went and got tested for it last week because my dog sleeps next to me and she has it. They are currently working to develop a human lyme vaccine.
@@foolishlyfoolhardy6004It is very unfortunate that you had that experience amd Im terribly sorry you went through that and i do sincerely hope you have since recovered and are well. But unfortunately there has been patients whove died from pseudotumor cerebri if thats what you were referring to in your comment. So if that was the condition you were referring to i think u shouldnt be saying that "you cant die from that" in your comment bc im pretty sure you are not a neurologist or neurosurgeon so how could you possibly know that? We should try not to spread misinformation and from all the info i gathered about that condition, the most common theme throughout it all was the unpredictability and incredible speed in which symptoms can develop. That itself already sounds very life threatening to me. If you were referring to your specific condition when you stated that phrase then by all means pls disregard my comment. Respectfully speaking, Its just that the last thing the world needs is more wrong information being spread.
Dr.Mike thank you for pointing out the part about"routine surgery." I just had major surgery, and so many people said oh it's routine it's no big deal. When in actuality it is!
That last one made me smile. I was hesitant at first, like, will she really risk it? She's kinda doing well for herself despite everything but when I saw her walking upright, that just made me proud of her. Maybe if I was in her shoes (not trying to be rude or anything), I would have understood her choice and where she got that courage to go through with that scary procedure. So happy it worked out for her.
It was so heartwarming and exciting to see her getting closer and closer to standing, and then she’s WALKING! Thank god for the amazing knowledge, technology, and skilled surgeons we have now… so happy that she can do something we take for granted like go for walks
I am so grateful to hear EDS mentioned, even in passing. I have hypermobile-type EDS and it took 17 years to hear about it and get diagnosed. We had to teach my doctor about it instead of vice versa. You are so knowledgeable and so kind, thank you so much for doing what you do.
One should always weigh the risks of having any surgery with the risks of going without. I remember seeing a story about a young man who was born with a condition that left his head resting upside down against his spine, and his limbs were twisted and smaller than normal. It turned out that he had a musculoskeletal disorder that left his ligaments and muscles weakened and unable to support various things like his head, and movement of his limbs. However, he was able to shuffle his legs in such a way that he could move around. He even had a thriving online business! When he went to see specialists to access his over health and the possibility of surgery, they found him to be perfectly healthy in every way besides his disorder. Everyone including the young man agreed that putting him through several risky and painful surgeries just to move his head upright etc, would potentially cause more harm than good so it was decided to just leave things be and just keep monitoring the young man’s health though regular checkups. It it ain’t broke, don’t fix it! However, in this Chinese woman’s case, her quality of life seemed to be greatly improved by her leg and foot surgeries so I’m glad she is able to live a more fulfilling and enjoyable life.
Tuanzhi's story brought tears to my eyes. As the story progresses, you begin rooting for her and her safe recovery. And the huge payoff was her taking that one step forward, just imagining how happy she must've been at the one moment is what did it for me.
1:31 - spring 2022 i was in track and there was a girl who had something like this. since it’s so rare im not sure if she had this exact thing (she also said she was sick so it could’ve been for something else). but it did look very similar. she was very nice and we kinda cheered each other on the entire race. and told each other we did well at the end. i haven’t met her again. i don’t even remember her name but i hope she’s doing well
Watching that lovely lady walk outside at the end genuinely made me choke up. What a sweet girl, so happy for her and her new lease (and view!) on life. Bless her forever.
Thank you for reminding everyone that YOU as the patient get to decide of a "routine" surgery is right for you. I have SVT, it popped up out of the blue when I was like 23 and nearly killed me, but it has been well controlled for the last almost 20 years with medicine. I got a new cardiologist who sent me to another cardio who wanted to do surgery, we talked about the pro's and con's and I decided that I just wanted to keep taking my medicine. I thought nothing of it until a month later when I got a bunch of paperwork about my up coming surgery. I called them and told them it must have been a mistake and cancelled. Two weeks later, I get a phone call about my surgery tomorrow, once again I cancel and tell them I do not want surgery. I was scheduled two more times before the doctor called me himself angry because I didn't want surgery. I was like we talked about this and i said no, he was offended, and finally said "fine, you can just spend your whole life taking a pill" I was like, yeah thats the plan. He couldn't understand why I didn't want that surgery but that's fine, he doesn't have to, because its not his decision.
The young women with the knees almost made me cry when she was able to take her first steps, idk why it just looks so wholesome and it made me so happy because I could see she was also really happy
*it seems important to me to distinguish between disease and condition, because that’s also what makes kids/people believe it’s contagious, and you can catch it somehow, when it’s not even a disease*
I love it when the the children can actually explain their conditions. It proves that their doctors care enough to tell THEM what's happening, instead of assuming they won't understand or care.
Thank you for sharing these stories! I'm particularly amazed by the fella with the skin condition using the fish as a type of treatment. At first, I thought of how expensive that must be, but then realized the upkeep must be practically nothing. Those fish don't need extra food and they'll breed themselves, so it's like having small friends in a beneficial relationship helping you daily.
The only thing that they’d need to do is regularly change out the water to prevent ammonia buildup. It really is an effective setup, and I think it’s pretty fitting that they’re using fish to help treat ichthyosis. Like the fish are redeeming their name.
I hope they're taking good care of those fish. They can't survive on just dead skin and are at risk due to fungi/bacteria/etc on the skin. I know that they're often starved for those fish pedicures. Very bad conditions for them. Only a concern, but considering how seemingly important these fish are for the kid, and these being just for private care, I'd expect them to be well taken care of.
@@SilverStarStorm. the fish weren't swarming him in the video the way they were in the pedicure video, so it seems like they're just regular hungry instead of starving hungry. i think they probably do the fish treatment right _before_ they do the do the fish's regular feeding.
When the lady with the reversed knees walked, I cried... I was so full of happiness for this young lady that I couldn't hold back my tears of joy!!! ♥️ 🧡 💛 💚 💙 💜
I have Ichthtyosis! CIE - because of that I also have rapid healing, a small % of us have it. If I get a small wound it's gone the next day. If anyone here has any questions about Ichthyosis, let me know, I'm happy to answer.
Does it itch at all? Is your skin thicker than average? Does it affect the whole body, or are there patches of thicker skin? And what about sunburn or typical burns? Does it peel extra, or does your skin shed often enough that you don’t really get burned?
Thank you dr.mike for always being consistent despite your busy and hectic schedule. Being a med student (studying to get into med college) it really helps a lot and boosts my knowledge about incredible human body! Love from India❤
I'm a teenager and I really like to study more about decreases and Dr Mike's video makes everything understandable and feels like watching again and again
3:00 this is very creative and useful solution and I'm so glad his mom came up with this possibility. Like Dr Mike said a true symbiotic relationship 👌
It's good to hear a doctor who understands hypermobility& EDS. My GPs don't have a clue & have no intention of finding out. It's so frustrating. That poor lady is extremely likely to be in pain but doesn't realise it because she's so used to it & has probably had people tell her it's growing pain, period cramps or the classic 'stop complaining, everyone had pain sometimes' to the point you just accept it & assume everyone feels awful & family who don't take any notice of it
my mom has a very close friend and her son has a very rare disease that less than 100 other people have been recorded having. But none the less, hes a very sweet person and we all love him very much
it was crazy seeing what they could do for some of these cases, particularly the last case! I appreciate the research effort that went into videos like these :)
Watching that lady have her legs corrected by surgery firstly blew me away, that such a change could be achieved. The pain she must've gone through (not to mention the fear) made me tear up; they really skipped the recovery process, but seeing her walk without assistance made my jaw drop. What a change for her quality of life. Absolutely heart-warming. I wish more people with such issues had the fortune of their issues being treatable, and the means to access such treatment.
I love that you talked about the names of the conditions. I have keratosis pilaris which already really affects my confidence- I really struggle with it. But it’s also called chicken skin, which I hate- when I read that it made me cry and made my own self image even worse because I can’t not think about it now whenever I look at my arms and legs. These names are damaging and it’s shocking that they don’t seem to realise it. I’ve had it for as long as I can remember which means that for as long as I can remember I’ve always had my are and legs covered and am incredibly insecure about them. I don’t need anything else added on top of that
I'm going to college right now as an MCD biology major. Doctor Mike has been one of my biggest inspirations to learn. It is such a good feeling to now understand some of the causes behind these unfortunate diseases and to keep up with the video in general.
Hey Doctor Mike :) With the heat so much of the US is staring down and as a Texas mail carrier, it would be great to see a video on the impact of heat exhaustion, heat stroke, how to avoid/prevent, and what to do if you feel yourself getting beat down by the heat monster. This past Saturday, after 10 days straight of working in a vehicle with no AC in temps and heat indexes of 105-115, I nearly had to call 911. Thankfully, I've done this for a while and I was able to pull myself together before I passed out. I bet some outdoor workers and/or NWS offices would love to do a collab and maybe share tips and tricks on how to literally survive the outdoors in extremely hot temps.
One of the things I love about you dr Mike is the fact that some conditions you don’t know like the pocket Hercules condition but you knew aspects of medicine that fall into that condition
I had one junior in my school long time ago with ichthyosis. I never thought he is one of the twenty in the world. Good for him now he is able to break all stigma and became a content creator with quite a followings
I cannot thank you enough for the dignity you speak of these people with. When you are disabled or different, you grow up under the weight of hatred, pity, patronization, dehumanization, "Inspirational" dehumanization, infantilization, and eugenic attitudes from even your own community or family sometimes. Every time someone talks about people like you, you sigh and think here we go again. More about how freakish I am or how I shouldn't be here or what a precious angel soul I must be here to teach you the meaning of life, not a human.... And then there's you. Talking about us like we're human. It's such a low bar but so few people bother to talk about us like we're worth treating with dignity.
Omg! I have a classmate who has Ichthyosis and she is a total rockstar!! I had no idea it was this rare but she is literally so sweet and doesn’t let her condition hold he back at all. That’s so crazy 😭
The knee hyper extension story reminded me of this girl I went to 4th and 5th grade with who had Spina Bifida. She was very positive and approachable for a 9 year old, and if memory serves right, everyone at my school accepted her. It was incredible.
I would love for my rare diseases and condtions to have media time! I was born with GACI, which kille over half the babies born with it and can cause a number of health problems down the road. I also have May thurner syndrome and RCVS, both also rare. I hope to someday be able to being awareness to all three and others many suffer from. You're awesome Dr.Mike! We need more empathy and compassion from Healthcare providers like you 😊
Jeez, I've never even heard of most of these conditions. It just shows how little this type of stuff is covered. Thanks for bringing a lot of this to our attention 🤩
We do actually have very good laser technology here in Brazil. For the treatment of the girl with excess hair, it might be either the case of it being an older clip or the case where our universal healthcare system, SUS, might not cover for a more expensive laser machine. North Brazil is also not necessarily our Boston of medical technology, I come from there myself
i also wondered if those lighter patches were either covered with a thin medical tape or just still in the healing process. i'd like to see a follow-up later on to see if her skin regained its pigmentation.
Tools don't think. I've seen a couples of videos where doctors didn't have the lastest technology but did an amazing job regardless. I also wonder if some ways to treat patients get lost as technology goes on. The most important thing remains for that girl to be treated. Even with advanced technology, if no physician is here there is no point.
Nos EUA, essa “tecnologia superior” que ele acha que tem la, provavelmente não ajudaria essa menina, pq não tem um equivalente ao SUS pra dar o tratamento de graça. Uma doença rara como a dela não tem nem tanto precedente e pesquisa pra determinar exatamente a melhor técnica, possíveis complicações e etc. Abordar esse caso precisa de uma dedicação enorme da equipe de querer ajudar. Gringo pensa q o Brasil não tem saúde de qualidade.. Infelizmente a qualidade superior às vezes fica reservada pra quem tem mais dinheiro, mas pelo menos ela teve sucesso no tratamento e melhorou a qualidade de vida.
The fish treatment is actually genius! I've swam with fish somewhat like that (they were always trying to eat my mom's moles and my freckles, 😅), but I hope he continues getting that treatment.
Always enjoy your vids, Doctor Mike. I have EDS and am always interested in learning about conditions that aren’t well known. Great information, as usual!
Thank you dr.mike for always being consistent despite your busy and hectic schedule. Being a med student (studying to get into med college) it really helps a lot and boosts my knowledge about incredible human body! Really appreciate you for making my sundays and wednesdays the best days to be alive!! Love from India❤
This is an exciting and fun way to learn about medical conditions. I love reading my standard textbooks, but after a while, it becomes tedious. These videos help in reigniting my curiosity about medicine. Thanks, doc.
Every time Doctor Mike talks he’s pouring out knowledge, or kindness. How freaking lucky are we to have him putting out such goodness for our free consumption. I love this guy.
I would love to see you do something on Poland's syndrome. I have it and have gone to so many doctors that have never heard of it or have told me it is not a real disability because they have never heard of it. I think getting the fact that it is out there can help a lot of people.
5:22 I understand conditions not wanting to be named after animals or food, but I mean come on. If we are gonna call ANYTHING a werewolf, it's gotta be that, and it looks awesome.
my son has a rare genetic condition, GRIN2B and he’s the only one (that i know of) with his specific variant of it. he has hypotonia, speech delay, cognitive delays.. he didn’t walk until he was 3. i truly appreciate you taking the time to educate people on rare conditions! ❤
That last gal im so happy those operations worked for her!! I had to have one of my knees reconstructed after breaking my tibia into many pieces and i had to relearn how to use it the way i had before. I cant imagine learning to use a limb in an entirely new way like that. I admire her tenacity! I hope she continues to improve and go places!!
That last one made my heart melt when I seen how good it turned out for her! I can’t help but feel sad for people going thru stuff like these conditions. I take normal everyday stuff for granted way too much. Being able to walk normal having no problems with my skin or hair etc. I’m just used to having those luxuries so seeing people dealing with this stuff makes me think of how lucky I am truly. I pray everyone in this video is doing good and happy n healthy!
I just had ankle surgery, and my surgeon initially recommended no surgery, until I reminded him of the 2nd fracture. I appreciated that he completely explained to me what he would do and why he needed to do it.
You do a nice job sir. The comments are reverent and extremely knowledgeable without a trace of arrogance. I'm very happy to have found this channel. Cheers from Canada!
I was told I probably need surgery to straighten my leg fully after my femur surgery. I asked to myself would it be worth it while already still recovering from my femur surgery or right after. I asked how important and they told me a bit of a limp but otherwise not anything serious. I told them I'll pass and if it comes to my leg not fully extending I'll just live with it, no point in cutting me open again. It's also only a maybe they're just guessing ahead, so very much question the procedures, thanks Dr mike
You know, I never thought of the names for diseases like that, but that is such a good point. From now on, I'm going to advocate for that to change as well. They really are dehumanizing. And that solution with the fish was pretty genius, like, wow! We need more solutions like that.
That last story was truly amazing. So glad to see how much her QOL improved after those surgeries.. Growing 12 inches, going on walks like a normal person now; you know she's living life with a new meaning now.
About the brazilian girl, we do have the technology for it in the country, but we still have places (like countrysides or small or poor towns) where they arent really accessible. I'm from a big city so i got good laser treatments easily, but unfortunately some people still don't have that privilege. We're getting there tho!
Disney Channel has some incredibly accurate & inaccurate medical scenes-> ruclips.net/video/SgLpXbaMZMQ/видео.html
Huge fan doctor mike :)
I like me
Hey Doctor Mike, I think you should do NHL injuries since hockey is very crazy and full of bad hits, fights, and lots of wild things.
rediscovering your channel after a longgg time mike and im glad
@justmads7256 i second this
The solution for the kid with the special skin condition was surprisingly wholesome, props to the mother for being able to come up with a solution who benefits everyone, especially the kid and the little fish even in desperate times for her.
I make soap and I had a customer who was always buying my soap with loofa in it, the soap also had a high glycerin content. When I asked why she always bought that soap she explained that her hubby had ichthyosis and the soap was the only thing that helped. It was better than the prescription stuff they had used. If I run into her again I will have to find out if she has ever heard of the method this boy's mother used.
@@rustynails8756 Hey, that'd be awesome 😍
Lots of faith in humanity restored on my end today
-That mom being able to come up with a good solution for everyone while probably super stressed out
-Dr Mike's channel always advocating for a good cause spreading this kind of info
-You doing this
I needed this today 😌
@@rustynails8756 I hope you meet her again so you can give her the advice. It would be great if it made a meaningful chance in the man's quality of life.
Absolutely! I immediately thought wow, what a creative and fantastic idea! Kudos to this mom, this is genius. I am seriously impressed. Having watched documentaries about the sisters with ichthyosis, they showed how painful it is to scrub off the dead skin... It's amazing that there's a different solution.
Is it wrong of me to think that those fish might be nibbling at skin flaking from more private areas? I dunno
The last lady and her surgeries, and the fact she can now go on walks, and enjoy herself without help, just made me generally smile. So wholesome
“I go for walks whenever I have time”
It really highlights that we really take so much for granted in life. People who can’t go out and enjoy the sun on their skin, who can’t walk for one reason or another, who have differences that many shun them for… so many of us are blessed to be able to just live life and do little things without much thought or preparation
I met a little girl while out shopping who had XP and was wearing the protective gear. I told her how cool she looked when her mom told me of her condition. I had originally presumed it was because of the pandemic. I'll never forget the high five and smile her mother gave her after our interaction. Kindness costs nothing, and I'm glad I met them. The lady with hyperextension I've seen before. There was a Victorian/Edwardian side show performer, Ella Harper, with the same thing. She was billed as the Camel Girl.
IKR? Those helmets look like the spacesuits from Star Trek: The Motion Picture, and it's so awesome. I wish I could be a sci-fi badass.
Kindness is free, you are absolutely right.
Spread it when you can. Making someone's day better should make you feel better too!
I got xp too
"I learn a lot from my patients" is a lovely thing to hear. I have doctors in my family who just mock their patients
I'm a doctor, I have colleagues that have mocked patients and I always call them out when I hear it. That is a terrible thing to do.
I had a physician like that, who'd refuse to listen to me because I was a teen and well, HE had a diploma, so he'd left me under medication that made me sicker and ruined my high school because I would miss half of the morning class, because I'd pass out after taking my meds lol. But it's okay, I didn't know how my meds affect me, I was just a dumb teen.
Then the next doctor was as comprehensive and useful. She's the one who told my mom that "cancer isn't that bad, everyone gets one sooner or later and it's fine" because she's a survivor??? Like wtf are you on, lady. Back then my mom had to undergo a PET scan to check some unusual results, and she was worried af. Needless to say, being told that didn't help her feel better a second. 😐
My current physician is absolutely delightful, though. He cares, listens to his patients and actually tries to work things out with us. He's open-minded and when my mom, who's fibromyalgic and has multiple chronic pains, told him she was taking therapeutic CBD, he said it was a good idea and encouraged her to do so if it helped.
I'm also kind of a nerd and likes reading medical stuff, and when the one time I was searching online for a possible condition of mine and went to see him about it, he listened and never dismissed what I said or was thinking because ngl, "I have no diploma and the internet is no medicine school". Turns out I was right about it, so I actually us both saved time- 😂
@@CapyrateI’m so glad you found a good physician! I’m sorry that your first ones were so awful though :(
I have ichthyosis. Not as extreme as Raphael's case. But, I found that swimming was a great solution. Being in the water softened the skin to allow me to exfoliate afterwards. And it was a great way to be active. And actually be an athlete. Which helped me socialize and come out of my shell. No pun intended
Hey, same!
I’ve always wanted to learn how to swim too… thanks for the inadvertent tip! Also thank God for aquaphor lololol
@@zachanikwano just gotta make sure you shower and lotion afterwards. I like Jergans Ultra Healing. I'll have to check out Aquaphor
@@foolishlyfoolhardy6004 Really You care more for a fish than a human?
@@foolishlyfoolhardy6004what is cruel? These are specific types of fish that eat meat. They are carnivorous .They're not starving, they've been used for hundreds and hundreds of years for this type of purpose. I can't even understand how you would get your brain to where you got it on this topic.
Saltwater wouldn't do anything different for this kid than regular water. The fish are literally eating the hyperkeratosis off of his body each day allowing him to move freely and not be in pain.
And you're worried about fish who might be hungry.
Do you think these people are not changing the fish water? Are you really that dense?
I have a very mild form of it too, my skin always itches but I can manage it relatively well with some skin care and exfoliating all parts of my body. Especially my legs and arms are bad.
My mom has psoriasis so at least she knew how to handle a condition like that and I was slathered in oil regularly. Her psoriasis has stopped showing up for about 20 years now since her menopause started because that condition really is a lot more influenced by hormones than mine.
Seeing how the surgeons changed that girl's life and how she looked so happy about being able to walk normally again truly warmed my heart. Not only that but also how moving these life changing events happen is truly a miracle.
I 100% agree that we need to change the names of so many of these diseases! Hopefully this is something you continue advocating for more on your platform!
what do you suggest we start calling them instead?
Substantial lion hair growth syndrome
As mean as some of the name sounds, it does describe what the disease is. Ichthyosis isn't exactly common knowledge but everyone knows what fish's skin looks like or what a werewolf is.
@linny356 well thats the frustrating part. But im sure we can figure out new names, we just need to work on it.
Please do NHL injuries. There’s lots. Hockey is wild,and full of injuries
I remember my cousin getting a lot of judgemental stares for her "puffy" baby. They thought she was overfeeding him and he was an obese baby, but in truth it was caused by steroids and other medications for his infant seizures.
I have EDS. I am so, so grateful for any media coverage of it. 15 years ago when I was first diagnosed, barely anyone knew about it. It took me 20 years of severe, debilitating pain and sickness to get a proper diagnosis. Thank you Doctor Mike for talking about it.
Sorry for asking but which one is EDS?
@@sagiekaharizi: Ehlers-Danlos syndrome.
I can’t imagine waiting so long for a diagnosis, I’ve been diagnosed with EDS and it’s‘buddies’ this year. And was lucky enough to only have a few people refuse something was their. ❤
@@fyrefli4109 thank you
I have the vascular type and wish people would talk about it bc it’s such a scary and deadly illness… I always hear “at least it’s not cancer” but I’d argue it’s just as bad, sometimes worse bc there are no cures, there’s not even a treatment so lessen it’s effects and your body betrays you even when you’re not doing anything… I ruptured my liver leaning on a table in school. I perforated my colon rolling over in my bed while asleep…
I used to work in a group home where one of the individuals living there had spastic quadriplegia. She was absolutely ripped because her muscles were always contracting and she had very little control of them. When I started working other staff told me that she used to have a 12 pack, but once she started a couple of medications it helped the spasms.
Using the fish for Raphael and his ichthyosis is a genius idea 😲 I’m so glad it gives him some relief
It's interesting that the condition is named after fish, and the solution also happens to be fish
@@foolishlyfoolhardy6004 Oh get a life if it is working then it is good.
@@foolishlyfoolhardy6004
My man, you do realized that was caused by, oh i don't know, the fact that it was public?
Of course there's gonna be a lot of things running around, and bad things could highly happen, yeahh...
But like, come on, it was obvious it was made for him, *and him only*, meaning they have a lot more control than the one advertised for public use.
And yes most of the infection happen because of other human that used the tank full of the fish rather than the fish itself....
Ps. English is not my first language, so I'm sorry if there's Gramatical mistake. Thx
@@foolishlyfoolhardy6004it’s likely that they have a method for sanitizing the environment he submerged in and keeping it separate from the fish habitat. Also he may be at a higher risk of infection without the fish treatment because more dry skin increases the chance of cracks forming in the skin.
@@foolishlyfoolhardy6004obviously that doesn't work or they would have been doing that. You don't think they tried exfoliation first. Cmon now.
Thank you Doctor Mike for talking about social acceptance for a moment. I used to be bullied in school for wearing hearing aids (i was the only one who had them) until i found a lot of good people who became good friends with me and taught me there were accepting people in this world
thank you for shedding light on such rare diseases. You are always open to learning new things and not afraid of admitting something you don’t know. Don’t change 💕
Pun intended?
@@Joetheknight406nah i didn’t even think about that 😭
@@Joetheknight406Took me a minute to see the pun but I found it and it's so hilarious 😂
Damn double puns 😂
@@OmerAsh what is it i don’t see it 😭😂
Its always nice to see Ehlers Danlos Syndrome brought up by medical professionals. I have it and I have had to explain it to doctors and nurses.
Same!
I've seen so many of us in the comments. We should start a club.
It's interesting because I'm only in my second week of medical school and have already learned about ehlers danlos in great detail, it's one of the first diseases we learn about. And it's in study materials for national board exams, so I know all doctors in the US have to learn about it. Maybe they forget?
Your empathy that you express towards these delicate medical cases,just shows the type of man and amazing
caring doctor you are.Truly admire these qualities of you.Thanks 🤗
The last story had me in tears. How wonderful and how patient doctors and surgeons are. That young woman is so brave.
I can understand the woman's knee procedures. I had both knees replaced. It was not fun. After surgery pain is real.
Hope you're doing well now
But it must feel amazing to walk normally again... to be able to just, decide to go for a walk. I have no cartilage left in either knee... and the left one routinely subluxates and sometimes even the femur telescops down between the tib & fib. I haven't done stairs normally for almost 23 years... when I was first diagnosed with early onset OA at age 14 after triple spraining my knee. They refused to do surgery for so long because I was too young... and now they refuse me because of my weight... which I gained from not being able to exercise anymore or even take a simple walk without oral steroids. I'd put up with any pain to walk normally again... goodness knows I'm in enough pain everyday already.
@@hosamhamdi819 Thank you. I am doing well. I have two wonderful scars down each knee. I can't cross my legs at the ankles when sitting. I have no flexibility in my knees. I am still afraid of stairs.
Mazel tov on getting new knees, and OOF on the recovery pain. I'm 2 1/2 weeks post-op (medical implant replacement) right now, and it's driving me nuts. The itching is gonna kill me, and I'm eating, like, twice what I normally do because my body won't stop demanding nutrients to heal this stupid 10cm/4" gash. Nobody talks about being ravenous after surgery, but it's real!
Props to the parents of these kids . I have special needs babies myself it is scary but rare condition is even scarier
We take for granted being "normal". We complain about the most miniscule things on our body. Nothing but love to anybody going through these tough conditions
Oh yeah ! I can't phantom how brave those people have to be.
It makes me feel so humble and fortunate.
@oceaneo4603
I’m pretty sure you mean “fathom”
not phantom
phantom is a type of ghost/monster
@@Legendary_Starlight Gotta check a few worlds a couple of time, English isn't my mother tongue.
'Glad you still was able to understand.
I hope my little brain will remember your in put.
Don't forget that "normal" people can also become injured and disabled, so nobody is safe.
i have a rare form of muscular dystrophy and the doctor at 1:14 was my paediatric neuromuscular consultant for my entire childhood, dr neil thomas!! so crazy seeing him pop up on a dr mike video!
That's crazy!
Yooo. I also had dr Neil Tomas. Bro was fuckin awesome. Especially his avengers lanyard he had. Was awesome looking back now
@@divinehades_sorry that I’m late but same
Shoutout to Dr Mike for making our Sundays & Wednesdays better!!
I love how compassionate and caring you are towards all kind of disorders and illnesses and never judgemental. And the way you decrypt a situation from both patient’s and doctor’s POV is just something that’s commendable. Have been following you for a long time for this quality content. Peewoop!!
New Dr Mike video yess!!! I love hearing + learning about new conditions! I live with ehlers Danlos syndrome and a slew of other conditions and it means the world seeing a Dr with such a big audience raise awareness for illnesses that most have never even heard of/seen before!! ❤️ it’s so so appreciated by the spoonie/chronic illness/disability community! 👏🏼✨ my fav Dr on the internet
@@RandomUser822be supportive for once.
We dont care once pot
@@bignasty7JB"We" also don't know basic grammar. 🙄
@@RandomUser822Be relevant for once
@@megorex630 karen
I'm a physiotherapist from India..I enjoyed watching all these, especially the last case with multiple bony corrective surgeries. Thank you for mentioning about rehabilitation, as sometimes our work is not given enough importance. Post surgical rehab is an important component of overall recovery. Thank you❤
I have vascular ehlers danlos syndrome and would love to share my story… gravity is an enemy, my own organs are enemies, it’s a cruel disease that has you anxious 24/7 and there’s no cure. For example, I ruptured my liver leaning on a table, i perforated my colon rolling over in bed. The blood vessels in my legs will rip and rupture simply from gravity. Please highlight this subtype of ehlers danlos syndrome, it doesn’t have any awareness in media or online. It’s debilitating and I consider it a terminal genetic illness bc my life expectancy is 48.
I've only ever seen people speaking about their experience with hypermobile Ehlers-Danlos. I didn't know how terrifying the vascular form was until I read this comment. Thank you for sharing. I stand with you, friend.
Hugs ❤
@maayanstern9050, that's because vEDS is incredibly rare! There's simply not many people that have it, so it's much less prevalent on social media. I have aEDS, an even rarer (although much less dangerous) subtype of EDS, I never even heard of anyone else having it.
In my opinion newborns should be screened for vEDS, as it's so dangerous. All subtypes of EDS can be deadly, but vEDS is on a whole other level.
*Edit: aEDS has been described in literature 27 times and distinguishes itself from other subtypes by congenital bilateral hip dislocation and, if tested, a distinct mutation.
I didn't know about this one. It sounds unlike anything I have ever come across. Thank you for sharing
Love coming your way
make this a mini series. want to see more of this from and with you. and add more of these rare medical cases from you or your medical friends. its like movie theater - totally amazing to hear.
I loved the last condition of the video. So much respect for her learning to function and do what she did with her condition. But the most amazing thing of it was her smile at the end as she was just walking in the rain.
I am so happy for her that she got the help to get her to this point ❤
The last story is making me tear up, god bless the charity that offered to pay for her surgeries. I hope she loves her new freedom and that she lives a happy, pain free life!
I love how you never judge people (at least outwardly) and never assume that someone is bad or wrong based on their condition
What I got from this, is there are a lot of things that are of "utmost importance". Thank you Dr Mike for drawing attention to some of these rare cases and pointing out the importance of empathy as well as science.
I had Pseudotumor Cerebri in 2007 when I was like 12. They told me I had 24 hours to live before my optic nerve exploded and killed me. So they rushed me into an emergency spinal tap and had an insane amount of spinal fluid come out. Dr said he never heard of that much coming out. I heard it was a very rare condition. My eyes crossed, arms and legs were numb, WORST headache/neck pain of my entire life, and couldn’t walk. Found out when I was 18 that I had Lyme Disease my whole life that probably caused it. (My mom got bit by a tic when she was pregnant with me so we both have Lyme Disease). It was so scary tho. I even called my friends at school and told them goodbye and asked my best friend to get in my locker and get my boyfriends jacket and to give it back to him.
Lyme definitely needs to be more tested for. It is so often overlooked as a possibility. I went and got tested for it last week because my dog sleeps next to me and she has it. They are currently working to develop a human lyme vaccine.
@@foolishlyfoolhardy6004It is very unfortunate that you had that experience amd Im terribly sorry you went through that and i do sincerely hope you have since recovered and are well. But unfortunately there has been patients whove died from pseudotumor cerebri if thats what you were referring to in your comment. So if that was the condition you were referring to i think u shouldnt be saying that "you cant die from that" in your comment bc im pretty sure you are not a neurologist or neurosurgeon so how could you possibly know that? We should try not to spread misinformation and from all the info i gathered about that condition, the most common theme throughout it all was the unpredictability and incredible speed in which symptoms can develop. That itself already sounds very life threatening to me. If you were referring to your specific condition when you stated that phrase then by all means pls disregard my comment. Respectfully speaking, Its just that the last thing the world needs is more wrong information being spread.
Dr.Mike thank you for pointing out the part about"routine surgery." I just had major surgery, and so many people said oh it's routine it's no big deal. When in actuality it is!
That last one made me smile. I was hesitant at first, like, will she really risk it? She's kinda doing well for herself despite everything but when I saw her walking upright, that just made me proud of her. Maybe if I was in her shoes (not trying to be rude or anything), I would have understood her choice and where she got that courage to go through with that scary procedure. So happy it worked out for her.
It was so heartwarming and exciting to see her getting closer and closer to standing, and then she’s WALKING! Thank god for the amazing knowledge, technology, and skilled surgeons we have now… so happy that she can do something we take for granted like go for walks
I am so grateful to hear EDS mentioned, even in passing. I have hypermobile-type EDS and it took 17 years to hear about it and get diagnosed. We had to teach my doctor about it instead of vice versa. You are so knowledgeable and so kind, thank you so much for doing what you do.
One should always weigh the risks of having any surgery with the risks of going without.
I remember seeing a story about a young man who was born with a condition that left his head resting upside down against his spine, and his limbs were twisted and smaller than normal. It turned out that he had a musculoskeletal disorder that left his ligaments and muscles weakened and unable to support various things like his head, and movement of his limbs. However, he was able to shuffle his legs in such a way that he could move around. He even had a thriving online business!
When he went to see specialists to access his over health and the possibility of surgery, they found him to be perfectly healthy in every way besides his disorder. Everyone including the young man agreed that putting him through several risky and painful surgeries just to move his head upright etc, would potentially cause more harm than good so it was decided to just leave things be and just keep monitoring the young man’s health though regular checkups.
It it ain’t broke, don’t fix it!
However, in this Chinese woman’s case, her quality of life seemed to be greatly improved by her leg and foot surgeries so I’m glad she is able to live a more fulfilling and enjoyable life.
Dr. Mike actually did a reaction to that one if you want to look it up
send link plz@@acidsupernova
HOW DID YOU TYPE ALL THIS?!
Tuanzhi's story brought tears to my eyes. As the story progresses, you begin rooting for her and her safe recovery. And the huge payoff was her taking that one step forward, just imagining how happy she must've been at the one moment is what did it for me.
1:31 - spring 2022 i was in track and there was a girl who had something like this. since it’s so rare im not sure if she had this exact thing (she also said she was sick so it could’ve been for something else). but it did look very similar. she was very nice and we kinda cheered each other on the entire race. and told each other we did well at the end. i haven’t met her again. i don’t even remember her name but i hope she’s doing well
Watching that lovely lady walk outside at the end genuinely made me choke up. What a sweet girl, so happy for her and her new lease (and view!) on life. Bless her forever.
Thank you for reminding everyone that YOU as the patient get to decide of a "routine" surgery is right for you. I have SVT, it popped up out of the blue when I was like 23 and nearly killed me, but it has been well controlled for the last almost 20 years with medicine. I got a new cardiologist who sent me to another cardio who wanted to do surgery, we talked about the pro's and con's and I decided that I just wanted to keep taking my medicine. I thought nothing of it until a month later when I got a bunch of paperwork about my up coming surgery. I called them and told them it must have been a mistake and cancelled. Two weeks later, I get a phone call about my surgery tomorrow, once again I cancel and tell them I do not want surgery. I was scheduled two more times before the doctor called me himself angry because I didn't want surgery. I was like we talked about this and i said no, he was offended, and finally said "fine, you can just spend your whole life taking a pill" I was like, yeah thats the plan. He couldn't understand why I didn't want that surgery but that's fine, he doesn't have to, because its not his decision.
The young women with the knees almost made me cry when she was able to take her first steps, idk why it just looks so wholesome and it made me so happy because I could see she was also really happy
*it seems important to me to distinguish between disease and condition, because that’s also what makes kids/people believe it’s contagious, and you can catch it somehow, when it’s not even a disease*
Not all diseases are contagious.
We need to teach kids that not all diseases are contagious. I have thyroid disease. No one is going to catch thyroid disease from being near me.
I've been asked if my genetic illness is contagious. Next time, I'll probably just say, "Only sexually."
I love it when the the children can actually explain their conditions. It proves that their doctors care enough to tell THEM what's happening, instead of assuming they won't understand or care.
Thank you for sharing these stories! I'm particularly amazed by the fella with the skin condition using the fish as a type of treatment.
At first, I thought of how expensive that must be, but then realized the upkeep must be practically nothing. Those fish don't need extra food and they'll breed themselves, so it's like having small friends in a beneficial relationship helping you daily.
Mike said it himself: a true symbiotic relationship :)
The only thing that they’d need to do is regularly change out the water to prevent ammonia buildup. It really is an effective setup, and I think it’s pretty fitting that they’re using fish to help treat ichthyosis. Like the fish are redeeming their name.
I hope they're taking good care of those fish. They can't survive on just dead skin and are at risk due to fungi/bacteria/etc on the skin. I know that they're often starved for those fish pedicures. Very bad conditions for them.
Only a concern, but considering how seemingly important these fish are for the kid, and these being just for private care, I'd expect them to be well taken care of.
@@SilverStarStorm. the fish weren't swarming him in the video the way they were in the pedicure video, so it seems like they're just regular hungry instead of starving hungry. i think they probably do the fish treatment right _before_ they do the do the fish's regular feeding.
When the lady with the reversed knees walked, I cried... I was so full of happiness for this young lady that I couldn't hold back my tears of joy!!! ♥️ 🧡 💛 💚 💙 💜
I have Ichthtyosis! CIE - because of that I also have rapid healing, a small % of us have it. If I get a small wound it's gone the next day. If anyone here has any questions about Ichthyosis, let me know, I'm happy to answer.
Does it itch at all? Is your skin thicker than average? Does it affect the whole body, or are there patches of thicker skin? And what about sunburn or typical burns? Does it peel extra, or does your skin shed often enough that you don’t really get burned?
You need sunscreen still?
Are you black? Or is it just white who can get it?
Does it get better with age somewhat?
@@akirahyrule2157 hi! Yes it itches A LOT. Much thicker skin than average. Yes my type is the whole body, another types are just patches
@@aldranzam3456 naahh worse
I love how compassionate Dr. Mike always is to everyone that he comes across.
Thank you dr.mike for always being consistent despite your busy and hectic schedule. Being a med student (studying to get into med college) it really helps a lot and boosts my knowledge about incredible human body! Love from India❤
0:05 - Schwartz Jampel syndrome
1:30 - Icthyosis
3:30 - Xeroderma pigmentosum
5:05 - Congenital hypertrichosis
7:05 - Congenital leptin deficiency
9:30 - Severe genu recurvatum
14:25 - Conclusion
W
0:33 having your muscles tensed all the time would hurt so much. That poor kid
I'm a teenager and I really like to study more about decreases and Dr Mike's video makes everything understandable and feels like watching again and again
3:00 this is very creative and useful solution and I'm so glad his mom came up with this possibility. Like Dr Mike said a true symbiotic relationship 👌
It's good to hear a doctor who understands hypermobility& EDS. My GPs don't have a clue & have no intention of finding out. It's so frustrating.
That poor lady is extremely likely to be in pain but doesn't realise it because she's so used to it & has probably had people tell her it's growing pain, period cramps or the classic 'stop complaining, everyone had pain sometimes' to the point you just accept it & assume everyone feels awful & family who don't take any notice of it
my mom has a very close friend and her son has a very rare disease that less than 100 other people have been recorded having. But none the less, hes a very sweet person and we all love him very much
This is the best segment of this show I have ever seen. It is an HONEST look at real-life circumstances. Well done.
it was crazy seeing what they could do for some of these cases, particularly the last case! I appreciate the research effort that went into videos like these :)
Watching that lady have her legs corrected by surgery firstly blew me away, that such a change could be achieved. The pain she must've gone through (not to mention the fear) made me tear up; they really skipped the recovery process, but seeing her walk without assistance made my jaw drop. What a change for her quality of life. Absolutely heart-warming. I wish more people with such issues had the fortune of their issues being treatable, and the means to access such treatment.
I love that you talked about the names of the conditions. I have keratosis pilaris which already really affects my confidence- I really struggle with it. But it’s also called chicken skin, which I hate- when I read that it made me cry and made my own self image even worse because I can’t not think about it now whenever I look at my arms and legs. These names are damaging and it’s shocking that they don’t seem to realise it. I’ve had it for as long as I can remember which means that for as long as I can remember I’ve always had my are and legs covered and am incredibly insecure about them. I don’t need anything else added on top of that
I'm going to college right now as an MCD biology major. Doctor Mike has been one of my biggest inspirations to learn. It is such a good feeling to now understand some of the causes behind these unfortunate diseases and to keep up with the video in general.
Hey Doctor Mike :) With the heat so much of the US is staring down and as a Texas mail carrier, it would be great to see a video on the impact of heat exhaustion, heat stroke, how to avoid/prevent, and what to do if you feel yourself getting beat down by the heat monster. This past Saturday, after 10 days straight of working in a vehicle with no AC in temps and heat indexes of 105-115, I nearly had to call 911. Thankfully, I've done this for a while and I was able to pull myself together before I passed out. I bet some outdoor workers and/or NWS offices would love to do a collab and maybe share tips and tricks on how to literally survive the outdoors in extremely hot temps.
One of the things I love about you dr Mike is the fact that some conditions you don’t know like the pocket Hercules condition but you knew aspects of medicine that fall into that condition
I had one junior in my school long time ago with ichthyosis. I never thought he is one of the twenty in the world. Good for him now he is able to break all stigma and became a content creator with quite a followings
The video said that specifically it's ichthyosis with confetti- aka the version where the skin is constantly flaking off- that's so rare.
Channel name?
I cannot thank you enough for the dignity you speak of these people with. When you are disabled or different, you grow up under the weight of hatred, pity, patronization, dehumanization, "Inspirational" dehumanization, infantilization, and eugenic attitudes from even your own community or family sometimes. Every time someone talks about people like you, you sigh and think here we go again. More about how freakish I am or how I shouldn't be here or what a precious angel soul I must be here to teach you the meaning of life, not a human.... And then there's you. Talking about us like we're human. It's such a low bar but so few people bother to talk about us like we're worth treating with dignity.
Omg! I have a classmate who has Ichthyosis and she is a total rockstar!! I had no idea it was this rare but she is literally so sweet and doesn’t let her condition hold he back at all. That’s so crazy 😭
Dr. Mike helps me fall asleep whenever I'm having difficulties. So calming🙏🏻🤍
this was beautiful so happy to see kids accept someone so different than them as nothing is different.
Thank you for the kindness you show when you speak about these conditions...
The knee hyper extension story reminded me of this girl I went to 4th and 5th grade with who had Spina Bifida. She was very positive and approachable for a 9 year old, and if memory serves right, everyone at my school accepted her. It was incredible.
I would love for my rare diseases and condtions to have media time! I was born with GACI, which kille over half the babies born with it and can cause a number of health problems down the road. I also have May thurner syndrome and RCVS, both also rare. I hope to someday be able to being awareness to all three and others many suffer from. You're awesome Dr.Mike! We need more empathy and compassion from Healthcare providers like you 😊
Jeez, I've never even heard of most of these conditions. It just shows how little this type of stuff is covered. Thanks for bringing a lot of this to our attention 🤩
Doctors know a lot but not everything.
Therefore it could be a journey of its own to get a diagnosis, when you can get one.
I think this is one of my favourite shows, Dr. Mike. You show great compassion and explain underlying issues very clearly. Fascinating cases!
We do actually have very good laser technology here in Brazil. For the treatment of the girl with excess hair, it might be either the case of it being an older clip or the case where our universal healthcare system, SUS, might not cover for a more expensive laser machine. North Brazil is also not necessarily our Boston of medical technology, I come from there myself
i also wondered if those lighter patches were either covered with a thin medical tape or just still in the healing process. i'd like to see a follow-up later on to see if her skin regained its pigmentation.
@@dietotakuI don't understand why she didn't wore a long sleeve shirt.
Tools don't think.
I've seen a couples of videos where doctors didn't have the lastest technology but did an amazing job regardless.
I also wonder if some ways to treat patients get lost as technology goes on.
The most important thing remains for that girl to be treated. Even with advanced technology, if no physician is here there is no point.
Nos EUA, essa “tecnologia superior” que ele acha que tem la, provavelmente não ajudaria essa menina, pq não tem um equivalente ao SUS pra dar o tratamento de graça. Uma doença rara como a dela não tem nem tanto precedente e pesquisa pra determinar exatamente a melhor técnica, possíveis complicações e etc. Abordar esse caso precisa de uma dedicação enorme da equipe de querer ajudar. Gringo pensa q o Brasil não tem saúde de qualidade.. Infelizmente a qualidade superior às vezes fica reservada pra quem tem mais dinheiro, mas pelo menos ela teve sucesso no tratamento e melhorou a qualidade de vida.
The fish treatment is actually genius! I've swam with fish somewhat like that (they were always trying to eat my mom's moles and my freckles, 😅), but I hope he continues getting that treatment.
Always enjoy your vids, Doctor Mike. I have EDS and am always interested in learning about conditions that aren’t well known. Great information, as usual!
The last story and the words "I like to go on walks" after having her legs straightened was so heartwarming❤
Thank you dr.mike for always being consistent despite your busy and hectic schedule. Being a med student (studying to get into med college) it really helps a lot and boosts my knowledge about incredible human body! Really appreciate you for making my sundays and wednesdays the best days to be alive!! Love from India❤
This is an exciting and fun way to learn about medical conditions. I love reading my standard textbooks, but after a while, it becomes tedious. These videos help in reigniting my curiosity about medicine. Thanks, doc.
Bro, if that mom really came up with the fish idea herself then that mom is a GENIUS!
Every time Doctor Mike talks he’s pouring out knowledge, or kindness. How freaking lucky are we to have him putting out such goodness for our free consumption. I love this guy.
I would love to see you do something on Poland's syndrome. I have it and have gone to so many doctors that have never heard of it or have told me it is not a real disability because they have never heard of it. I think getting the fact that it is out there can help a lot of people.
the last case actually made me cry, she seemed so happy and thankful and thats everything to me
5:22 I understand conditions not wanting to be named after animals or food, but I mean come on. If we are gonna call ANYTHING a werewolf, it's gotta be that, and it looks awesome.
my son has a rare genetic condition, GRIN2B and he’s the only one (that i know of) with his specific variant of it. he has hypotonia, speech delay, cognitive delays.. he didn’t walk until he was 3. i truly appreciate you taking the time to educate people on rare conditions! ❤
love the vids Dr. Mike your channel makes me fall in love with the practise of medicine even more than i already am keep it up
That last gal im so happy those operations worked for her!! I had to have one of my knees reconstructed after breaking my tibia into many pieces and i had to relearn how to use it the way i had before. I cant imagine learning to use a limb in an entirely new way like that. I admire her tenacity! I hope she continues to improve and go places!!
13:02 "This is like when medicine, artistry, and engineering all coincide" I like that sentence. cuz no "business" in there.
That last one made my heart melt when I seen how good it turned out for her! I can’t help but feel sad for people going thru stuff like these conditions. I take normal everyday stuff for granted way too much. Being able to walk normal having no problems with my skin or hair etc. I’m just used to having those luxuries so seeing people dealing with this stuff makes me think of how lucky I am truly. I pray everyone in this video is doing good and happy n healthy!
7:40 that mom needs a medal for pushing that baby out
I just had ankle surgery, and my surgeon initially recommended no surgery, until I reminded him of the 2nd fracture. I appreciated that he completely explained to me what he would do and why he needed to do it.
Thanks Dr Mike for this educational vid and for shedding light on these rare diseases ❤
You do a nice job sir. The comments are reverent and extremely knowledgeable without a trace of arrogance. I'm very happy to have found this channel. Cheers from Canada!
we need a Dr. Mike reacts to medical ASMR asap!
We take so many things for granted, but we actually should be thankful every day.
9:40 my knees bend back that way too! Not as severely as with that little girl of course, mine only go back by a little more than 15°.
I was feeling down before I watched this but seeing that last case really lifted my spirits. Very happy for her.
I was told I probably need surgery to straighten my leg fully after my femur surgery. I asked to myself would it be worth it while already still recovering from my femur surgery or right after. I asked how important and they told me a bit of a limp but otherwise not anything serious. I told them I'll pass and if it comes to my leg not fully extending I'll just live with it, no point in cutting me open again. It's also only a maybe they're just guessing ahead, so very much question the procedures, thanks Dr mike
You know, I never thought of the names for diseases like that, but that is such a good point. From now on, I'm going to advocate for that to change as well. They really are dehumanizing.
And that solution with the fish was pretty genius, like, wow! We need more solutions like that.
9:48 … so my knees aren’t supposed to bend like that??
Yeah ikr my legs are always like that
That last story was truly amazing. So glad to see how much her QOL improved after those surgeries.. Growing 12 inches, going on walks like a normal person now; you know she's living life with a new meaning now.
About the brazilian girl, we do have the technology for it in the country, but we still have places (like countrysides or small or poor towns) where they arent really accessible. I'm from a big city so i got good laser treatments easily, but unfortunately some people still don't have that privilege. We're getting there tho!