This is a very old clip. Mandy ended up getting one of her legs amputated below the knee, and I remember how excited she was shopping for new sneakers for her prosthetic leg and being able to buy a normal sized shoe. However, since that time, she's had multiple complications precisely because her limb continues to grow making the fitting of her prosthetic leg an ongoing challenge.
Thank You So Much For The Update About Mandy. This Is Exactly Why We Must All Be So Very Thankful For Our Own Good Health!, .. We Must All Continue To Pray For This Sweet Young Woman!! .. God Bless You Always Ophelia!! CC ❤❤❤
@@annataymond9529 Check out her wiki page. They were trying to preserve what "healthy" tissue they could and it worked for a while. A short while. She was ambulating much better, but the disease just went into overdrive and she ended up getting much worse. Very heartbreaking.
I hope Mandy is doing alright now. She's a strong woman. As I was watching this I could feel pain in my legs. Pls be grateful for whatever you have. Cases like these remind me to be grateful and not complain about trivial things. Our body and health is the biggest blessing
Mandy Sellars was the first person that I learned about with this condition. Her left leg was amputated in 2010 but her stump continued to grow and swell. She has founded a charity to support others with the same condition. She is still _going strong_ to this day. Sending LOVE to her. ❤
Mandy has had one of her legs amputated and even more positive, she has been put on a certain treatment that has slowed the growth of her legs and even reduced the size in small amounts. She is such a strong lovely woman .
I’ve been following this persons for a few years she did get her below the knee amputation. And they are giving her a pill in trial stages and it seems to help the growth slow down. Her name Mandy is the same name as my little sister who passed away. So I have wanted to know her outcome. Blessings and Peace ✝️❤️
I used to live right down the road from a woman who had a similar condition. Sweet lady. We all really felt for her! The town got together and raised money for an operation for her.
It's so sad that the town had to pool money together just so she could get an operation she needed, but it's still heartwarming to know that so many people banded together to help another human in need. Good on you all!
I was about to mention elephantiasis and Proteus syndrome but didn't know much about them. Doctor Youn explained them beautifully. Super informative! Thanks
I had a google to see if there was any updated info and the bit i could find suggested that the current belief is that Mandy has a P1K3CA gene mutation. The info i could find suggested she had a BKA of her left knee in 2010 but unfortunately the limb began to grow rapidly the following year. When they found the P1K3CA gene mutation the wiki said afterwards she was given rapamycin which led to some form of reduction in size. I couldnt find any further details on that, but there was a post about her joking that she has an invisible disability now so perhaps some kind of improvement. But thats literally all i could find so definitely not 100% on that but she now has a charity working with other people diagnosed with similar gene mutations. This is all very cursory info i could glean from a quick search so may not be 100% accurate ofc Edit: just found another bit of info saying she'd lost 6stone (84lbs/38kg) off her legs due to that medication, wow.
@BexRB93: Thank you a thousand times for this amazing update!! ... I shall continue to pray for her. .. Sincerely appreciate that you took time to do research on Mandy. .. You Are An Angel!! .. God Bless You Always, CC ❤❤❤
3:26 My dad and brother have neurofibromatosis and they're so glad they don't have giant tumors all over. they still have tumors and my brother has 3 brain tumors and 2 eye tumors and next year he's suppose to get one of his eye tumors, which cause the only eye he can see out of to swell up until his eyelid blocks his vision, removed. i know no one cares but it's interesting to me i guess
I care. ❤ my brother had NF and passed away over 4 years ago. He was in his early 60s and his tumors pushed on his lungs and he had them in his brain as well. Awe sending love to you and dad and brother. NF is an obscure disease and it’s not contagious! It can be very painful and cause a lot of stares from strangers unfamiliar w the condition. My brother was teased and in pain most of his life and people complain because they want bigger boobs or a few less wrinkles… crazy!
@@barbarabrown9269 they amputated one leg after she developed sepsis i think, cant remember the exact reason right atm, a prosthetic was made but her leg started to grow back!
@@barbarabrown9269 The show I saw years ago, she was getting on a plane to go to another country to see if that doctor could help. Her hopes were so high, but he refused as he thought it might be some sort of cancer and trying to remove some of it might cause a rebound effect where it could grow even more quickly. I think the last part of the video was one that I saw. Brave woman. Chin up, no matter how many times she's been told no.
There’s been a few updates on Mandy, she did have a leg amputated. And is on medication she’s been taken to reduce the size of a stump and Her other leg
Most people have to contend with some medical condition such as sugar diabetes MS or being physically challenged. No matter what a person is dealing with, you can always see other afflictions that seem so much worse then what you are dealing with. For example I have been 90/% paralyzed since I was a baby but I feel lucky because I have learnt to live a normal life and do everything with one hand. I feel sorry for Mandy because her condition is continuing getting worse and so she is having to cope with her deteriorating condition and surgery is so questionable. On the hand Mandy is typical of other people with disabilities I have been around and that is being happy with what you have. I have always said, being disabled isn't all that bad because you do learn to cope. In my personal opinion, the hard part is dealing with society who also want to label you as being mentally challenged as well and in my case that included physical therapists, occupation therapist and a doctors who were physical and reconstruction. That continued to happen even though I have a university degree.
So there is documentary on Mandy and other’s people that have this disorder on different parts of the body, I found it to be very interesting. I am glad that chose against the amputation, a friend of mine had to have BKA and he has to spend thousands of dollars a year for new prosthetics and he is in constant pain, and gets a lot of ingrown hairs.
Lymphedema can be caused by many more things. The most common are the removal on lymph nodes (usually due to cancer), birth defects of the lymphatic system or secondary lymphedema from lipedema. I suffer from lipedema and actually had 12l removed in one of my many surgeries. It’s definitely tough on the body. I couldn’t really walk for a week because I was so close to fainting.
It seems to me like part of the reason she is so small on top is because of the huge energy required by the growth load the bottom half of her body is causing. I can't imagine how that would change after an amputation. I hope the best for her.
I can't watch your video just now to see if you covered it, but Mandy has to have her leg on our right amputated, I don't remember why it how much leg was left. I really sorry for Mandy, she has such a hard life yet it seems medical people haven't helped much at all. She's extremely strong, courageous woman
She appears to be improving with a pharmaceutical treatment. Her condition appears to be a never-before-seen genetic mutation so it’s pretty novel and therefore really hard to treat.
I’d get both amputated above the knees and skip prosthetics. With her strong upper body, she could be quite mobile with a wheelchair and lifting her body around.
You didn’t show the latest video of her . She had the amputation a while ago. She has an undetermined diagnosis. She is now taking a medication that has been losing weight and shrink.
I was born with Klippel-Trenaunay syndrome in my right leg and will have a biopsy soon to determine what type of mutation caused it. If I have the "right" mutation there a medication that could help.
I wonder if there could have been a safe way to bind her legs and slowly cut off circulation in a similar way to how eunuchs used to castrate themselves safely?
Poor Mandy has had many issues. Unfortunately, even after they removed the one leg, it began to grow again. She is an amazing woman who remains upbeat. I wish her the best
Chào bạn hôm nay xem và nghe bạn chia sẻ căn bệnh và cách chữa và điều kiện các bạn chia sẻ rất là hay rất là hữu ích trong cuộc sống mến chúc bạn và gia đình luôn mạnh khỏe chúc cuối tuần vui vẻ
I definitely would have opted for a bilateral AKA, even the one at the hip. Couldn't they have done an autologous transfusion, reserving the blood retrieved from the lower Limbs, and then transfusing back to her? Just my thoughts.
They would have to during the surgery. One risk is hypovolemic shock following surgery. There’s also a limit on how much blood and how much fluid can be replaced in a 24 hour period so that the heart can cope and not be overwhelmed. If too much is given, you run the risk of pulmonary edema (fluid in the lungs) because of the insufficiency of the heart being able to keep up. Pulmonary edema basically causes a person to drown from the inside. There’s a very delicate balance that has to be struck when doing these procedures. Another complication of multiple blood transfusions is internal hemorrhaging or a condition called DIC (disseminated intravascular coagulation) where microscopic blood clots form in vessels. Multiple possible complications, potentially as severe/fatal as these make surgeons and patients weigh the benefits against the risks before continuing. If the patient’s life depended on the surgical procedure, it would change the dynamic quite a bit. In this case, her life wasn’t immediately at risk from the condition she suffers with, so it makes the benefits worth substantially less than the risk involved.
If you are reading this there’s a reason……No matter how good or bad you have it,wake up each day thankful for your life.Someone somewhere else is desperately fighting for theirs ❤️🇧🇸
So body shapes like pear shape in general can be considered as mosaicism as well? That is too bad that genetic engineering is still very primitive. Also, wish at the very least they could have routinely remove tissue, drain etc. to reduce her leg size despite continual growth and find a way to stop the growth. This is bc this documentary must be over 10+ years old now. I wonder what you or other experts could do nowadays. Also you unlocked extra fear of lymphoedema via parasitic worms. Have you or could you talk about what plastic surgeon do about lymphoedema if anything.
No, having a differetly proportioned body or different areas where body fat is distributed more than others isn't the same thing as having all the cells (including bone and muscle) in particular parts just continue growing indefinitely.
At the end when we looked at Mandy in just a t-shirt, and based on how gaunt her shirt is, I think it's possible Mandy may have an eating disorder caused by the extra weight she's carrying in her legs. I'm most certainly not judging her for anything, it just looks to me like her arms and face are super skinny.
They addressed it in the documentary… her legs take all her energy, all her calories, she tries to keep weight on her upper body but her massive legs steal it all
This is a very old clip. Mandy ended up getting one of her legs amputated below the knee, and I remember how excited she was shopping for new sneakers for her prosthetic leg and being able to buy a normal sized shoe. However, since that time, she's had multiple complications precisely because her limb continues to grow making the fitting of her prosthetic leg an ongoing challenge.
Thank You So Much For The Update About Mandy. This Is Exactly Why We Must All Be So Very Thankful For Our Own Good Health!, .. We Must All Continue To Pray For This Sweet Young Woman!! .. God Bless You Always Ophelia!! CC ❤❤❤
😢
Below the knee??? And she was able to have a normal sized shoe?? How was below the knee enough?
Indeed. For anyone interested, here is link to wiki page on her: en.wikipedia.org/wiki/Mandy_Sellars#
@@annataymond9529 Check out her wiki page. They were trying to preserve what "healthy" tissue they could and it worked for a while. A short while. She was ambulating much better, but the disease just went into overdrive and she ended up getting much worse. Very heartbreaking.
I hope Mandy is doing alright now. She's a strong woman. As I was watching this I could feel pain in my legs. Pls be grateful for whatever you have. Cases like these remind me to be grateful and not complain about trivial things. Our body and health is the biggest blessing
Spoilers when it cut off it grew back 3 years later.
So there going to research on her to find the gene that able to do that
I saw an update documentary and one leg was amputated and she was trying to keep the other.
Wiki page on her: en.wikipedia.org/wiki/Mandy_Sellars#
@@lizzeyflower Imagine if you could harness that gene to replace amputated or injured body parts.
@alycewich4472 yes that would be amazing to know. If stars something small regrowth of one Toe. Can picture regrowth of a leg
Mandy Sellars was the first person that I learned about with this condition. Her left leg was amputated in 2010 but her stump continued to grow and swell. She has founded a charity to support others with the same condition. She is still _going strong_ to this day. Sending LOVE to her. ❤
Mandy has had one of her legs amputated and even more positive, she has been put on a certain treatment that has slowed the growth of her legs and even reduced the size in small amounts. She is such a strong lovely woman .
@@oatsmcgoats8493 I have actually had a text conversation with Mandy and she said it’s not a effective but there are still small changes .
@@oatsmcgoats8493well damn
I’ve been following this persons for a few years she did get her below the knee amputation. And they are giving her a pill in trial stages and it seems to help the growth slow down. Her name Mandy is the same name as my little sister who passed away. So I have wanted to know her outcome. Blessings and Peace ✝️❤️
Aww. Much sympathy to you.
I had an older sister named Mandy, who passed away as well. Sympathy to you.
I used to live right down the road from a woman who had a similar condition. Sweet lady. We all really felt for her! The town got together and raised money for an operation for her.
It's so sad that the town had to pool money together just so she could get an operation she needed, but it's still heartwarming to know that so many people banded together to help another human in need. Good on you all!
It wasn't lymphoma disease?
What was the cause?
@@MessianicJudaism I’m not 100% sure what the condition was.
Bless you all.
I feel sorry for her to undergo through such a terrible and rare disease. I hope she will find best path for her recovery
That's crazy! Dr Youn seems so sympathetic, while also being super informative. I always learn something new! ❤
I was about to mention elephantiasis and Proteus syndrome but didn't know much about them. Doctor Youn explained them beautifully. Super informative! Thanks
I had a google to see if there was any updated info and the bit i could find suggested that the current belief is that Mandy has a P1K3CA gene mutation.
The info i could find suggested she had a BKA of her left knee in 2010 but unfortunately the limb began to grow rapidly the following year.
When they found the P1K3CA gene mutation the wiki said afterwards she was given rapamycin which led to some form of reduction in size. I couldnt find any further details on that, but there was a post about her joking that she has an invisible disability now so perhaps some kind of improvement. But thats literally all i could find so definitely not 100% on that but she now has a charity working with other people diagnosed with similar gene mutations.
This is all very cursory info i could glean from a quick search so may not be 100% accurate ofc
Edit: just found another bit of info saying she'd lost 6stone (84lbs/38kg) off her legs due to that medication, wow.
Yeah, I remember seeing an update on this, that they'd found a drug that turned off the growth. At least she may be stable enough for a prosthetic(s).
@BexRB93: Thank you a thousand times for this amazing update!! ... I shall continue to pray for her. .. Sincerely appreciate that you took time to do research on Mandy. .. You Are An Angel!! .. God Bless You Always, CC ❤❤❤
@@oatsmcgoats8493 ..she last posted on twitter yesterday
I'm glad she found help.
@@carolyncornelius1492 Agree 💯
Poor dear. My heart goes out to her.
3:26
My dad and brother have neurofibromatosis and they're so glad they don't have giant tumors all over. they still have tumors and my brother has 3 brain tumors and 2 eye tumors and next year he's suppose to get one of his eye tumors, which cause the only eye he can see out of to swell up until his eyelid blocks his vision, removed. i know no one cares but it's interesting to me i guess
I care. ❤ my brother had NF and passed away over 4 years ago. He was in his early 60s and his tumors pushed on his lungs and he had them in his brain as well. Awe sending love to you and dad and brother. NF is an obscure disease and it’s not contagious! It can be very painful and cause a lot of stares from strangers unfamiliar w the condition. My brother was teased and in pain most of his life and people complain because they want bigger boobs or a few less wrinkles… crazy!
I remember seeing this. They amputated and the leg stump kept growing
I remember that too
They did amputate?!? When I saw this show years and years ago she had refused surgery of any kind. How is she now???
@@barbarabrown9269 they amputated one leg after she developed sepsis i think, cant remember the exact reason right atm, a prosthetic was made but her leg started to grow back!
Yes, she went with amputation a few years back. It has been a while since the last update. @@barbarabrown9269
@@barbarabrown9269 The show I saw years ago, she was getting on a plane to go to another country to see if that doctor could help. Her hopes were so high, but he refused as he thought it might be some sort of cancer and trying to remove some of it might cause a rebound effect where it could grow even more quickly. I think the last part of the video was one that I saw. Brave woman. Chin up, no matter how many times she's been told no.
Bless this woman’s heart! I feel so sorry for her and hope she gets help with her leg💜💜💜
Mandy's such a sweetheart. Bless her
Bless this woman..however long it's been. Nobody should have to feel alone because of a physical condition.
There’s been a few updates on Mandy, she did have a leg amputated. And is on medication she’s been taken to reduce the size of a stump and Her other leg
Most people have to contend with some medical condition such as sugar diabetes MS or being physically challenged. No matter what a person is dealing with, you can always see other afflictions that seem so much worse then what you are dealing with. For example I have been 90/% paralyzed since I was a baby but I feel lucky because I have learnt to live a normal life and do everything with one hand.
I feel sorry for Mandy because her condition is continuing getting worse and so she is having to cope with her deteriorating condition and surgery is so questionable. On the hand Mandy is typical of other people with disabilities I have been around and that is being happy with what you have. I have always said, being disabled isn't all that bad because you do learn to cope. In my personal opinion, the hard part is dealing with society who also want to label you as being mentally challenged as well and in my case that included physical therapists, occupation therapist and a doctors who were physical and reconstruction. That continued to happen even though I have a university degree.
Keep up the best life you have now! And ignore those ignorant people.
I remember seeing this documentary on TV years ago. I hope Mandy is doing well.
Sad thing is after the amputation, it started to grow again, then they gave her medicine and it shrunk and put it on bay
So there is documentary on Mandy and other’s people that have this disorder on different parts of the body, I found it to be very interesting. I am glad that chose against the amputation, a friend of mine had to have BKA and he has to spend thousands of dollars a year for new prosthetics and he is in constant pain, and gets a lot of ingrown hairs.
Lymphedema can be caused by many more things. The most common are the removal on lymph nodes (usually due to cancer), birth defects of the lymphatic system or secondary lymphedema from lipedema.
I suffer from lipedema and actually had 12l removed in one of my many surgeries. It’s definitely tough on the body. I couldn’t really walk for a week because I was so close to fainting.
He know that. He said the most common reason im USA is how heavy many are.
Mandy Sellars has a wiki page if you want an update on her and her amputation, and her diagnosis they finally figured out.
It seems to me like part of the reason she is so small on top is because of the huge energy required by the growth load the bottom half of her body is causing. I can't imagine how that would change after an amputation. I hope the best for her.
No, it didn’t change.
Oh my goodness! The poor lady. My heart goes out to heart
I really appreciate your compassion and scientific approach.
I've seen her in my local furniture shop very strong lady
I can't watch your video just now to see if you covered it, but Mandy has to have her leg on our right amputated, I don't remember why it how much leg was left. I really sorry for Mandy, she has such a hard life yet it seems medical people haven't helped much at all. She's extremely strong, courageous woman
She appears to be improving with a pharmaceutical treatment. Her condition appears to be a never-before-seen genetic mutation so it’s pretty novel and therefore really hard to treat.
Not me thinking it was about legs growing longer when I first read the title 💀
I’d get both amputated above the knees and skip prosthetics. With her strong upper body, she could be quite mobile with a wheelchair and lifting her body around.
She is a really strong lady! Wish there was some solution...
You didn’t show the latest video of her . She had the amputation a while ago. She has an undetermined diagnosis. She is now taking a medication that has been losing weight and shrink.
I was born with Klippel-Trenaunay syndrome in my right leg and will have a biopsy soon to determine what type of mutation caused it.
If I have the "right" mutation there a medication that could help.
There’s a follow up video about her operation. I remember it gets worse before it gets better but they eventually find the genetic problem.
I wonder if there could have been a safe way to bind her legs and slowly cut off circulation in a similar way to how eunuchs used to castrate themselves safely?
Poor Mandy has had many issues. Unfortunately, even after they removed the one leg, it began to grow again. She is an amazing woman who remains upbeat. I wish her the best
You are the first Dr say it could be Parasites. You are the best, thank you for being real. Love your videos
Chào bạn hôm nay xem và nghe bạn chia sẻ căn bệnh và cách chữa và điều kiện các bạn chia sẻ rất là hay rất là hữu ích trong cuộc sống mến chúc bạn và gia đình luôn mạnh khỏe chúc cuối tuần vui vẻ
I definitely would have opted for a bilateral AKA, even the one at the hip. Couldn't they have done an autologous transfusion, reserving the blood retrieved from the lower Limbs, and then transfusing back to her? Just my thoughts.
best wishes to Mandy
I wish the best for you.
I remember seeing the program about Mandy, a few years ago
If blood loss from amputation is a risk, then why not do a blood transfusion?
They would have to during the surgery. One risk is hypovolemic shock following surgery. There’s also a limit on how much blood and how much fluid can be replaced in a 24 hour period so that the heart can cope and not be overwhelmed. If too much is given, you run the risk of pulmonary edema (fluid in the lungs) because of the insufficiency of the heart being able to keep up. Pulmonary edema basically causes a person to drown from the inside. There’s a very delicate balance that has to be struck when doing these procedures. Another complication of multiple blood transfusions is internal hemorrhaging or a condition called DIC (disseminated intravascular coagulation) where microscopic blood clots form in vessels. Multiple possible complications, potentially as severe/fatal as these make surgeons and patients weigh the benefits against the risks before continuing. If the patient’s life depended on the surgical procedure, it would change the dynamic quite a bit. In this case, her life wasn’t immediately at risk from the condition she suffers with, so it makes the benefits worth substantially less than the risk involved.
@@72bslade Never knew that, thanks.
She was diagnosed with PIK3CA-related overgrowth spectrum Syndrome
Can the doctors do lymphatic transplant?
That poor lady !❤
Could it be something to do with her thyroid or pituitary?
I have followed Mandy for decades ❤️Strong woman!
Why couldn’t they remove excess tissue from above the knee like a “leg tuck”?
Dr. Youn, I’m new here but do you have a video on comedones? 😢
Seems you could auto donate blood for infusion at time of surgery
Where’s the DX & followup??
Wow that's insane! Poor girl.
I have neurofibromas aka nf1.
I love all of your videos , but this one, with all the editing and sfx, gave me motion sickness somehow @_@. It's a little much.
🙏💕
Old clip but I wonder what would happen if they just cut off both of her legs I mean sure she doesn't want that but I'm curious
If you are reading this there’s a reason……No matter how good or bad you have it,wake up each day thankful for your life.Someone somewhere else is desperately fighting for theirs ❤️🇧🇸
Her SHH & HOMEBOX genes are haywire
If you wait 2 long, the heart might be damaged too far for surgery... I have seen her 15 years ago... asking for help...
All those growths of lumps I remember my ex mother in law had that and it made her miserable 😢
she could take a periodical suction for her legs i think.
Her condition makes mine seem so insignificant.
Reminds me of that song ny ZZ Top. 😆
How sad. She needs to go to the NIH in the US to seek help.
Couldn’t they do one leg then see if it’ll help?
Can you do a video on Melania Trump's surgeries?
Hi
I feel bad for her that she had the amputation and that the leg grew back. :(
She must be in so much pain.
I feel as though if I were her I would done an AKA on both legs and just learn to manuver a wheelchair.
Stones, pounds, feet etc.. How about kilos, grams, so people around the world would have any idea how much her legs weigh, without using converters
About 90kilos. 😨
Screw stones and pounds. Give me kilograms damn it
Poor woman 😢
Why the heck is she wearing such high heels?! Maybe for posture?
It looks like she has giantism but the one where it enlarges the limbs in width.
Why does this Doctor always speculate? Just tell the story!
My heart bleeds 4 her!
Parasite when on vacation?
Makers me afraid of vacations
So body shapes like pear shape in general can be considered as mosaicism as well? That is too bad that genetic engineering is still very primitive. Also, wish at the very least they could have routinely remove tissue, drain etc. to reduce her leg size despite continual growth and find a way to stop the growth. This is bc this documentary must be over 10+ years old now. I wonder what you or other experts could do nowadays. Also you unlocked extra fear of lymphoedema via parasitic worms.
Have you or could you talk about what plastic surgeon do about lymphoedema if anything.
No, having a differetly proportioned body or different areas where body fat is distributed more than others isn't the same thing as having all the cells (including bone and muscle) in particular parts just continue growing indefinitely.
Can't they just upload her consciousness into a T-1000 terminator body and discard her old body?
At the end when we looked at Mandy in just a t-shirt, and based on how gaunt her shirt is, I think it's possible Mandy may have an eating disorder caused by the extra weight she's carrying in her legs. I'm most certainly not judging her for anything, it just looks to me like her arms and face are super skinny.
I suspect that it's a function of the growing legs stealing all the calories. If she ate recklessly, they'd just grow faster.
They addressed it in the documentary… her legs take all her energy, all her calories, she tries to keep weight on her upper body but her massive legs steal it all
Proteus syndrome
just cut off both legs, burdening the body and draining the nutrients too much.
What a terrible condition. It makes her life so hard.
14Ib is exactly 1 stone not about. 😂
Omg..stop the swooping sound effect on every transition please.
I was thinking the same thing! So frustratingly distracting
Jabs and bad diet - bad surroundings - also look at the parents! Research 1986! Just saying...
AMPUTASI JLN AMAN ,MNGHENTIKAN CACING PITAA KE TUBUUH. !!!!
$$$$$$$$$
Big oof.
This scares me. It’s the only medical condition that causes obesity
Actually there are a few, not to mention mental and medication.
she's Bigfoot