My Klippel- Feil Syndrome Story
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- Опубликовано: 25 янв 2015
- This my story on how I was diagnosed, how many doctors I had seen, and how it affects me personally. This video is meant to raise awareness to physicians, medical staff, people in the community and anyone that may have some of the same symptoms. The only way to get better care and earlier diagnosis is to ask for it by raising awareness. So please share this video, and feel free to ask any questions, and I will do my best to answer or try to direct you in the right direction.
I was diagnosed with this at 3 years old, thank you for this video. You matter, we matter. This is so important and I hope you’re alive and well.
Today my daughter was also diagnosed with this syndrome. She is two years old. Has there been any change in your body since you discovered the syndrome? Have you followed any treatment or exercise? I don’t know what to do.
Who’s here because of big Ed from 90 day fiancé new season 2020?
_23Nostalgia _ 🙋🏻♀️
_23Nostalgia _ me
Yes, I’ve wondered if Ed could lose weight & see the return of his neck but, Arthur tv commented Ed’s problem was due to this syndrome so I was curious to investigate it 🧐
Lol... Maybe ......
Chiropractors can do so much damage when they don’t understand a person’s underlying congenital condition.
Thank you for creating this video! I was diagnosed at age 51 after a car accident. I understand your frustration about not getting diagnosed properly.
Hi! i too have klippel Feil syndrome and have never met anyone else who does. you look a lot like me. to the untrained eye you look completely normal. but i do notice you neck is just barely crooked and your chin seems to favor to go to one side of your body. MINE DOES THE SAME! at first glance most people don't notice anything wrong with me. it's not until i pull my hair back and tell them to look closely that they notice. I always wear my hair down to cover my neck, i'm so self conscious. thank you for sharing your video. i sent you a PM on FB and a friend request. I hope you'll accept and we can talk more. Unless you're living with a rare condition, no one knows how alone you can feel.
I have it too. Just found out like a week ago, I am 30 years old! For the past few years I would get headaches here and there, and like u said, I would move a certain way, and that’s it my whole side gets locked...or wake up unable to move my neck. It was hard to get up, drive and look in my blind spots. I just thought it’s my bad posture over the years. But when I started getting headaches everyday, constant tension in my jaw shoulders and neck, ringing in ears, brain fog and all sorts of other things this past year or so, I went to like my 5th chiropractor and that’s when I found out my c2 and c3 are fused. I was shocked. I’ve had several xrays before and no one told me anything. At least I know now. I’m like you, can’t really tell cuz my neck looks normal, but that doesn’t mean we don’t get the same pain and complications that anyone with kfs has.
I have the same symptoms and same condition . I was diagnosed 10yrs ago. I am now in my mid 40s and I know how awful the pain can be. I have found staying warm helps me s well as reducing stress and getting massages .
I am 56, and found out about 5 years ago about my KFS. My brother is missing a vertebra, and my sister also has neck pathology (but not KFS, technically). EMDR and meditation have helped me. Getting treatment for anxiety also helps. Plus, if you work on a computer, get an ergonomic specialist to help you with your setup. They cost a little money, but I think your company has to pay for it under the ADA (Americans with Disabilities Act), but I’m not positive about that.
I, unfortunately, had a rarer condition than kfs that causes even more pain, so the kfs is in the background.
I always tell people, don’t be rare! Doctors have no idea what they’re dealing with, so they usually treat you like you’re a whiny complainer who wants meds instead of somebody who simply wants solutions to stop their constant daily (;:&$@! pain and suffering!!!!!
Best of luck to both of you youngins’ (lol to my silly reference to the ages you both mentioned). Anyway, seriously, I sincerely hope your lives are much less painful than mine overall since knowledge is power!!!
It is so frustrating to be misdiagnosed and sent away by doctors. You really have to be your own advocate for your health. I am so sorry that you have had to go through so much pain and continue to do so. I hope that one day they find a way to treat Klippel-Feil Syndrome.
Thank you for sharing! I came across your video while studying for my exam and hearing you speak was more valuable than reading a text book - Much love
Im 17 and I have kfs seeing someone talking about it makes me feel kind of good
Hang in there, Keanna! I came across your video while trying to do some research on KFS. I was diagnosed at age 29 and I'm now 32. I was just as alarmed as you were when I found out and like your case, doctors have told me there's not much to be done about it, even though I experience a lot of numbness in my hands and constant back and neck discomfort and pain.
I know it's probably a scary time for you but keep living your life and fighting the good fight. Stay strong :)
You are so strong and beautiful. Your story about dragging yourself to the sale is incredible. I hope things are well and you can eventually get treatment for your condition.
I did not get dx'd until I was 67! Nobody put all the symptoms together until one doctor figured it out. They knew I had the fused vertebra since I was in my early 30's but nobody figured it out!
I was diagnosed in 1996 i was 21. Have had two spinal fusions I have missing ribs heart disease spine curves under shoulder blades osteo arthritis. Aging of spine etc. The pain is excruciating. I am so thankful for u sharing I cried for u and also knowing I'm not alone. My husband cannot even touch me without pain.
I was diagnosed last week (at 28)! It’s been quite a journey with almost 10 years of trying to get a diagnosis 😕 I’ll be seeing a spinal surgeon next week so it will be interesting to see what the possible ways forward are. I think maybe my KFS was ‘triggered’ (can’t think of a better word haha but like flared up) after a motorbike accident when I was 18.
Thank you for your story. A lot of this is what I'm going through. I have a fusion of my skull, c1,c2,c3. Inoperable as well my c1 is tilted forward and fused in an angle. I have all the numbness and the loss of use of my arms from time to time as well. I don't know your faith but God bless you and my our struggles be told. Thank you for this, and you.
Hi! It seems we share the same issue. I have upper cervical spine issues. Idk if it is Kippel Feil syndrome though. Do you have KFS? May God bless you and let us put our trust in Him. He can do miracles.
Your smile is special.
I can relate to so many parts in your story! I was diagnosed at birth with Klippel Weber (KTW syndrome). It affects both legs and feet and my left arm and left hand. I have a port wine stain that goes up the left side of my body, compensatory scoliosis that has left a hump on my back and lots and lots of pain everyday. Some days are better than others, though. But some days it's debilitating. And people don't understand it at all. I also have a scar that can be seen in the vlogs that I do with my 15 year old son, behind my left ear, where the knot that grew back there was so large that the doctors had to remove it surgically. I'm so glad that you have become an advocate for Rare Diseases like the one you and I have. We need more of us to sort of 'come out of hiding' (so to speak)
BFMDocs FamNStuff just so crazy how little things come to light and you'll start to learn you're not alone. Like I've always had a lump on the right side of my neck as big as a golf ball for over 10 years probably over 15 and it was just there. When we were kids my brother and I used to give neck and back massages to each other and my mom and I was always called Rock neck because you could break a brick over the back of my neck lol. How funny now to know that actually that is kind of true! :D
I was diagnosed a year ago at 57 with klippel Feil.
I was born with one leg longer than the other.
A wandering lazy eye.
I've suffered with chronic nevk psin for 30 years .
a bone scan finally showed up the fused neck discs .
And early this year they found I had a congenital hole in the heart.
All problems that looking back woth hindsite point to klippel Feil
I have Klippel Feil syndrome never met so many people to relate too I've always felt alone with this
I was also diagnosed with Klippel feil. I ended up having a spinal fusion last year due to a ruptured disc. It sucks. Good luck! things always work out for the best
did you have your KFS treated by a surgery???
How is it now. Did the fusion help?
Thank you so much. My 6 year old daughter has also been diagnosed with Klippel Feil Syndrome but thank God she is active toddler. :)
Today my daughter was also diagnosed with this syndrome. She is two years old. Has there been any change in your body since you discovered the syndrome? Have you followed any treatment or exercise? I don’t know what to do.
Just wanted to know how you are doing now? Your story is similar to my wifes. Appreciate you posting this.
Hello! I am 50 and just found out of have KFS. Someway is good to know it until now, because let me leave my life normally, jumping,running, dancing. But suddenly one day without any reason I started to get my left side of my face and neck paralyzed. Doctor send me to emergency saying than I was in a post stroke condition, so for that reason the hospital did all kind of studies until they found out what was going on. I feel confident about recovering and help me subconscious not to be reprogrammed for the worst. I am taking CDS so than help me to continue my normal life, like no syndrome happen never.
Hope you are doing great too🙏🏼✨
Wow, I can relate, as I am in the process of finding a new doctor willing to listen to me. I was diagnosed with golden har syndrome when I was born as I had excess cornea tissue and two small anomalies, one on my ear and one my cheek. I underwent a huge process of having doctor panels check me out etc as it was rare, but also very rare to have it manifest in my eye. I had strange dizzy spells and vertigo, which I now know were more like seizures, as a teen. All sorts of test, mri, ct, neurologists, you name it. We found nothing, they went away. I was pretty normal and healthy until 20 years later, at 34 that I was working on boats. I started having back pain, which I had never had before. I went to a chiropractor who checked me out and asked me when I had had the trauma. I had never had any, so he was puzzled. He ordered xrays, and I had cervical fusion of C2,C3, and C4 and minor scoliosis like issues in my lower back. He toke to not really adjusting but instead focused on circulation, which also was not a long term fix. I had to take a year off of working to try to get better. I have fought increased inflammation issues now and they have been getting worse. I feel like my head could slide right off my spine some times. I blames it on being out of shape, or overweight. I decided to google golden har syndrome again, and many of the spine deformities match, but many did not. I recently started doing research on my own, because my family doctors basically not taking me seriously. I leave feeling so defeated. I recently stumbled upon Klippel-Feil syndrome and it matches up with everything that has been happening. I am convinced I was misdiagnosed and I am seeing a new doctor very soon, to discuss tests. Your story it so eerily similar, that I even work at a pawn shop. Lol. I am so sorry you are going through this, and sorry about my novel, but I feel your pain and you are not alone. I hope this new doctor has the time and interest to help me, because I really don't want to feel like this forever. Thank you for sharing your story. Much Love and hope you find some relief.
I think i have it as well. I am 37... starting around age 30 I started to have debilitating neck and back pain. I was ignored by my family and my doctors even though one time I fell out in the yard and I couldn't get up. It would take me three days to clean the house just because I could only do a little bit at a time and it was excruciating. Fast forward to 2017 in the fall and I was T-boned by a car on my driver side. I was the driver and the car at fault hit me on the driver side wheel base so hard that they broke the axle and my head flunk forward. I went and had X-rays and MRIs and got physical therapy for about 4 months but like you said it seems to make it worse. The doctor in my opinion was clearly only interested in money when I told him how difficult it was for me too get in the vehicle to drive half an hour to the physical therapy and how painful it was. I got fired for missing work and here I am now in April still jobless and in pain everyday. I was never prescribed any pain medication and was treated so disrespectfully it's just horrendous. At first I was told by a nurse that I was constipated and then she threw a bag of fiber powder at me. That was in the urgent care after the accident. So come to find out when I got my MRIs that my C1 in my C2 vertebrae are fused from birth, and to my skull as well. When the footage came back the nurse was all excited because she said she had never seen that before. This actually in some way may have protected me when I got in this car accident. I also have 4 herniated discs. Two in the neck beneath see two and two in the lower back as well as scoliosis of the lower spine and a couple bulging discs, which of course are not as bad as ruptured but these happened to be pressing on the nerves. I'm 37 and I feel like an old lady and I can't even bend over to a 90 degree angle or even a quarter way down.
I've been getting the runaround Tua recommended back Center... I can't work I feel like I'm a burden to my family was constantly yelling and angry at me and I can't do all the things I want to do. I'm not a victim but I don't deserve to be treated this way. Thank you for inspiring to get back on the phone and get in the car tomorrow and be my own Advocate not take any disrespectful treatment or no for an answer!!!
Now I also know to name this syndrome and push for an answer.
Thank you for sharing your story and many blessings to you. All the best
I think I might have it because I have a short neck and because i have it move trouble moving it back and forth I also have contistant back pain. But I haven't for tested for it yet.
Thank you for making this video, I really appreciate it. I have KFS as well, and it's been hard to deal with but hearing other people talk about it is very helpful to me.
I my self have KFS I don't know which type but I was wondering if there is a surgery to fix this
I feel the same way about my genetic condition. I wish more people know.
I have a fusion of my C2-C3 vertebrae. I’ve had pain at the base of my neck for years accompanied by headaches and migraines, eye strain and ear pressure. I also have minor scoliosis and a curvature of my neck. I am currently going through genetic testing for Klippel-Feil.
My dad also has a rare condition called Ehler Danlos syndrome and my aunt has fibromyalgia. I have some traits of EDS but not enough to be diagnosed. I would like to know why I have this fusion and always have the issues I do. I also hip pain and horrible leg pain during the night.
Thank for sharing your diagnosis I am learning more about it myself.
I also have a fusion of C2 and C3.
I KFS, Syringomyelia, scoliosis and Spina Bifida Occulta and I was diagnosed at 32. I too was a passenger in a car and we were hit by a teenager texting. I went to Neurosurgeon and he told me what I had and sent me on my way.He diagnosed me with KFS and did not run more tests. I have always had pain, migraines and had surgery as an infant which my mother was told I was fine and didn’t need follow ups. Turns out that was Spina Bifida Occulta. This past year I got bad and insisted the doctor do MRIs on my whole spine. Turns out all the surgeries and health issues I have been diagnosed with all had to do with KFS and no one connected the dots til 8 years after my car accident.
You are one of the lucky ones. I can't tell you have KFS at all !
I have it, and have what doctors call a "web neck" , and my left side is slightly deformed ( smaller deformed ear that is deaf, jaw that is crooked, collapsed / missing ribs , fused and deformed vertebrae, as well as the scoliosis.
But maybe I'm luckier than i thought, since besides dull neck and rib pain, I live a normal life.
I'm glad that the paralysis went away for you.
The thought of it scares me, since you said it just showed up one day with no warning.
My question to you would be what work have you have done to your spine ?
You have a perfect range of motion.
yea, she looked much better compare to most victims in figure
Mine is a less severe form. I have limited motion in turning my head mostly as well as asymmetrical locations of ear canals, which makes me hard if hearing on one side as well as my eye sockets being off kilter. Another visible difference is how it has affected my collarbone due to the pulling of my muscles with my cervical ribs.
hi, im from Peru i was diagnosed at 27 years old. i never had hearth problems and other complications. thanks for your video.
I have put this up on my tick tock I have been diagnosed with almost every thing that you mentioned and more I do not have the outward indicators besides my neck being that my shoulders want to protect my neck and head nor do I have the organ deformation so I am very lucky I know most are not. On the other hand where I have it in my neck thoracic and lower lumbar I didn't technically find out until April 22nd 2022 but it was in my chart since I want to say July 18th 2021 and for years being in pain and having stuff go out on me and I will never give up I am going to keep going forward and I am working very persistently to reach the maximum outcome of what can be done and then live my life. With the pain which I know people out there there's someone out there or multiple people are thousands of people that are in way more pain than I am for other circumstances or maybe even the same, I would not wish this upon anybody and furthermore once I did get the diagnosis even though I didn't know what it was until I had to look it up which I Came Upon This video and it is by far the best testimonial and informative video I have come across so thank you so much, I have many things that are going on but for anybody coming across this video or even the video I reposted on other platforms no matter what we all have to keep going and I'm still trying to understand a lot of what is going on the one thing that has helped I was in so much pain I was literally thinking to myself do I have this all wrong is it just in my head and with the diagnosis which they automatically want you to talk to someone which I was like no I fully understand and it took the weight off my shoulders because I then knew that all the pain that I've been going through besides the pain already knew from injuries and other stuff it wasn't just in my head it was real it is real, and as she describes where you turn your neck or something goes numb or you cannot get up and move I was looked at like oh you're just being lazy English I always try to keep myself busy I am happy hopeful and I am me people don't see the suffering and stuff that I hold off until I am alone I don't think it's fair for me to be a burden to anybody which is the wrong way to think about it. With any complication rare disease disease diagnosis if you need help reach out to anybody anyone You Are Not Alone and you can persevere through hardship we as people we are capable so much never count yourself out of anything keep pushing forward and thank you.
I have klippel feil syndrome with a single c4-c5 fusion with kyphosis and slight scoliosis.I am male. I felt a pain in my neck while working out that went through my spine. I was 21. Now im 22 and got cervical arthroplasty done. Im not sure if the surgery was necessary but I was feeling a difference in my walking and started having pain in my arms,my reflexes were also more sensitive than usual,but this might have been something that was present before the incident. The lower extremity electromyogram showed no abnormalities. Your story is inspiring, to be a person who has to go through all this out of nowhere.Keep on going and my advice is that you tried a plant based diet to reduce the inflammation and pain youre feeling and get a higher chance of your bones being strong. I suggest you do some research on it or visit nutritionfacts.org which is a non profit website on health.Thats pretty much all you could do for your problem as I understand. You could also not do that and thats also fine, just a suggestion. Remember, you had no part in this and life is yours to live.
My daughter just got some x-rays results and like you, she has c4-c5 fusion. she has reported pain on her back and shoulder. Like this girl, she looks all normal probably that is why she never diagnosed. She hasnt being dignosed but after reading a little more and researching, I will write to the Dr. to do all the test need it. Thank you for sharing. I am very worry and scared.
I'm a medically retired Seabee also with a single congenital fusion at c4-c5. Did the cervical arthroplasty help? I'm about at my wit's end with the pain. I'm going to bring KFS up to my doctor and see what he says. They mention surgery previously but I was skeptical; however, if you had it done and had the same issue, I'd be more inclined to have it after hearing your story.
@@rosaelenadesert6457 Hey Im now 28. and I literally have no complications from surgery. I can workout and everything normally. The question is assessing whether the person needs the surgery. Im still unsure if I needed it. It is very easy to panic when you find something like this out but keep your cool and understand that everything will most likely be fine with or without surgery unless an emergency comes up. I realize this is late and I apologize, I don't know why I didn't see this.
@@SeabeeLand If you have lots of pain you should probably do something. Mine was a mixture of pain and thinking the surgery would 'fix' something. The surgery could help a bit with pain, but it doesn't fix the abnormality. You'll still live the same life just with an implant in your neck. If I could go back I would chill for a few more months to see if pain was reduced and reassess for surgery. That's not to say I regret it. I have zero complications from it.
I am in my 50's and just found out I have Klippel Feil. I have always had a lump on the back of my neck that made doing gymnastic difficult (I did balance beam and doing a sommersault on the beam, it would irritate the bump. They always would spend extra time looking at my spine in grade school when we had scoliosis screenings at school but thought I was just born wonky (one shoulder higher than the other) I have a long neck and no other symptoms (that I know of) but recently I've been having issues with possible Thoracic Outlet syndrome on my left side.
My c-1 is fused to my skull. I have had two spinal fusions. I am fused from my skull to c-7 now. My numbness in my hands has been permanent since 1997. I'm now 42. I am miserable. I hope we can find some relief. My thoughts are with u and all of us!!
CCBear1975 have you heard of Kratom
Ps 2 of my vertebrae are fused, I saw a spinal surgeon too and he refused to operate because klippel fiel syndrome increases the risk of paralysis 6X more than normal, even if everything goes ok because the spine is so unstable.
Hello if you do surgery for your Klippel feil syndrome??
Have you found any treatment successful?
Espera. Eu não entendo sua língua... Você tinha a síndrome? Como vc se curou?
I'm dealing with KFS pain since I was only 12 and now I am 20 just two months before i diagnosed
I was born in a different part of the world but I have KFS as well but I have a bump in my neck that how I knew I have KFS and I understand that pain you go through it sucks hang in there I'm 18 but the way
my mother, me, my daughter, my sister, and many uncles and cousins have it as well. My daughter and I have the least amount of systems as we have our c3 and c4 fused and sprengels. I played football all through high school and it took until my senior year when i was almost paralyzed taking a hit that I was finally admitted to the hospital to be diagnosed with Klippel-Feil Syndrome. I am 31 now and its extremely uncomfortable at times, but massage therapy and a good indica strain of cannabis seems to get me through. my sister swears by chiropractic work, but i refuse because i also have a narrow spinal canal that often gives me stingers so ive deemed it too risky.
Oh gosh i have also my c3 and c4 fused .I have pain on my hands ,legs ,head ,thorax, ears ,everywhere it's terrible .I have been diagnosed the last month. 😣
Luckily I had surgery for my kfs when I was 13. I am 46 now. Please check for reproductive problem as this is also a problem for kfs patients. Good luck. You are beautiful.
Wait, which kind is your KFS case? can KFS be treated??? isn't the surgery high risk???
i never think that kfs canbe treat. becaise it has fusion at c1 and c2 mostly. i also has it. if it can surgury. it is very lucky
I'm 46 also and just found out that I had it, I've never felt any pain until I got knocked out and sent to the MRI and discovered the problem, wow
@@drkoko9604
I am 46 & juz got dx'd after excruciating nekk pain & fused c2c3 c4c5 & have appt. Consult next thurs...
Sad there's not many answers out there but tbh I am fukked up from tha floor up with other health issues so this is juz 1 more thingy ta deal with...
A literal pain in my nekk!!! Giggles & skips away Smirkin' ta myself!!! (Sorry for my cynical humor; it's tha only way I cope!!!)
Much luv & lukk ta all!!!
✌🍀♥️🌈🥰
@@pissypixiesplayland70 mine is c6, c7 , and c8, but I never get any headaches or neck pain though that's what's surprising. I did an MRI from a head fall and the neck fusion was discovered.
if i get to meet you in person at least once it would be worth it...i have most of the birth defects of klippel-feil
Im 19 and have been getting migraines once a month or so for the past 4 years. Just recently I started going to a chiropractor and found out my C1 vertabrae is fused to the base of my skull. Would this be considered Klippel-Feil syndrome or something else?
Hi, I do not know much about this disorder I am new in this. You can check some of the symptoms associated with the syndrome and see if you have some others. Usually, there are things that sometimes passed unnoticed because we think is just a small problem. When my daughter was little she had problems when sucking her bottle and used to snore as well. When she started growing she started opening her mouth to breath properly, I took her to the dr. and he said his tonsil were too big they removed them and voila problem fixed, no more snoring. Because she was opening her mouth to breathing these affected her teeth, then she had to use braces and voila gorgeous smile. Just a few years ago she started having pain problems when urinating then we though drink water etcetera... after her x-ray results and reading yesterday, she has many of the Klippel Feil syndrome symptoms. Good luck.
More than likely, it is determined by 2 or more congenitaly fused vertebrae
OMG I think my 16yr old has this. Omg I dont know what to think. I so scared for now. Gotta make a dr appt now. Prayers we find answers
my name is Charlie I also have klippel-feil I'm 13 years old I have to wear a neck breaks because of this genetic disease I haven't had anything as bad as you but I do get a lot of headaches
Me too
and how are you now?
alguien puede traducirme lo que dice la chica por favor, no entiendo y me urge saber
La chica esta diciendo que tiene el syndrome the Klipel feil, que se caracteriza entre muchos de los sintomas por tener algunas de las vertebras de la espina dorsal unidas. Dice que tiene unidas las vertebras de la C1 a la C4 y que es llamada escoliosis. Y que apenas a a la edad de 27 anos fue diagnosticada. Que se dio cuenta por el dolor en su espalda y que en algunas ocasiones estuvo inmobilizada. Como son las vertebras C1 que esta debajo de la nuca su caso es unoperable.
Is there a good charity that research’s KFS to donate to
maybe,and I hope so
yes! Check out N.O.R.D. they dedicate their time and funds raised to many rare diseases. 👏
I have scoliosis & surgery at age 12 fused at T1-T5. I was diagnosed with KFS at 18 and had surgery at 21 & am fused at C3-C6 and also have titanium disks at C3 & C4. I'm 33 now and suffer from chronic pain everyday of my life. Sending gentle hugs!
Can we talk? cause I'm also have my bones fusions
Здраствуйте , кто оперировалься ?? помогаеть ли операция ??? Желаю всем Здоровья
Hi sister can you send some information about doctors who treated you so that I can also contact them
I want to ask how to cure from pain in shoulders and back due to this syndrome
Me too
I know there's others out there like you I have the same condition I have klippel feil syndrome as well mine was discovered when I got hit by a car while I was at age 12 I know it's hard to have all that pain and problems I'm working on the documentary very soon.
I understand all of it, I've got klippel fiel syndrome too, the first time I knew I had a problem I jumped on a trampoline and my whole spine felt a spring had bounced, I got spinal stenosis at 25 and in 41 now, I've got multiple deformities but I think I only got a mild version of it.
Hi bro I also have Klippel girl syndrome can you send you mobile number so that I can know about the treatment
You're so beautiful. I also have KFS C1,C2 fused too my skull.
Today(15 july 2018) I am diagnosed with KFS. :/
:-) we’ve lived the same story only mine is dystonia caused and im only 24 rn, but car accident and coma at 17
i have it to i got diagnosed when i was 2 years old
This is practically my story 1-4 and car accident and chiropractor and severe pain.
Only 40k have it in the world, correct? You stated 1 in 40k which is different. Just want to clarify for viewers. I too live with constant pain from my many dis eases. I wish every person with KFS would post a testimony. Sort of a medical book, in video form, for doctors, insurance companies, patients and pharmacists to view. Can anyone contact an advocate to get it done? Thank you!
It is diagnosed to 1 in 40k, we don't have an exact number. I personally have received multiple messages from physicians and patients thanking me for the information.
Hey, I hope you're doing ok. I'm sorry you have to deal with this shit.
hi!! when i was diagnosed in 2006 the doc thought he was going to see a 70 year old due to my spine scans. boy can i relate.(i was in my late 30's)
hey hey hey, smoke weed everyday. Get a prescription (being facetious, but it seems like it works as pain treatment for lots of people)
Es deprimente está enfermedad ahora de grande se me nota mucho más y lo e ocultado a toda mi familia no sé dónde hacen operación
Yeah
Mayo clinic stated it is genetic I was born with this and my girls have to be x rayed periodically.
My name is Brad, I'm 43 years old from Maine I am the 7th case in the world to have KFS. Shriners hospital in Massachusetts saved my life. I was the Test patient for the GOD AWFUL brace. ❤️❤️❤️❤️ I had to were it for 14 plus years, FULL steel and plaster pushing on my right side neck and a "Arm cup" that pulled me back in place.
Hi Keanna you might have a Tarlov cysts on the sacrum caused by cerebral spinal fluid leaks I hope your feeling better today. If I'm right you are feeling slightly better to day See I don't have Klippel but I do know Tarlov it's linked to Klippel- Fell also your due to get much better I will turn on notifications please let me know. Thanks
many things make you special... one of those things is that you are amazingly beautiful. wowzers.
Sweet Jesus Christ my pain has been insane your years ...about to blow my fucking head off. I flipped a few cars in the past.....i can't hold a job. Not even my 20$ hr jobs....cant sleep right. All a Dr told me was you have a degenerative spine and born with fused vertebra in your kneck.. They act like it's no big deal and basically said tough it out. The pain didn't stop at my neck. My shoulders now pop out of place the pain is shooting through my kneck and shoulders and feels like my kneck is collapsing on itself. I don't know what to do anymore. So I'll just crawl back into a bottle.
Yea I have two vertebraes in my neck nervous about it
Weight training has helped me out with the pain from kfs. Maybe it will help you too?
I'm 45 and have klippel feil and look normal like you, lol I don't have muscle in my hands and allot of pain too
My son! is victim, the same, syndrome K. F .A. ,and I need help please, my son is 11 years old, he live, Whit my ex, couple, and alone just Whit my son in Alvarado Texas, she makes a little money and. she can a make a lot actions at the same time, is legal alien like my son and I live in Mexico! and Ido whit70 dollars a weak, staring at 7 and finish at 5 pm please, ones Anny ongs. our somebody to helpless Whit information, because we don't have resources! thx and God blessings, everyboddy!please we need the difusion of this video! sorry for my ugly English!
Said i have two bones c2 n c3
Even though it's genetic I don't think it's heritable, I was looking at studies trying to answer that question
you can not pass it to your kids I have 3 boys one is your age and not a one of my kids have it. you don't look like the rest of us that have it your neck is long not short that way you did know you had it hun because you look like everybody else and that's a good thing but the rest of us don't look like you.but I know what it like to be in pain all the time at 9 I had a internal decapitation. I was paralysed from the neck down and all I did was fall and hit my head. I'm like you I have in c1 c2 c3 when I hit my head I had be out side for 30min no new I was hurt till my mom seen me not move the they rushed me to the e.r. and told my mom I was d.o.a she said keep working on her and they did and here I am to day (vamp)
I am 46 and I have Klippel Feil. I have a neck like her, long but with a C2-3 long fusion. I suffer from the more rare type that causes Hypermobility. Only 20% of Klippel Feil has this. I have broken my neck 3 times in 4 areas from 3 auto accidents all under 8mph. Told if I fall or get hit again I'll be a quadriplegic. This is not including the cervical kyphosis and 4 levels in my lumbar and severe case of scoliosis. My great grandmother, Grandmother, Mother and her twin sister, Myself and my daughter all have Klippel Feil's and all of us have had multiple cervical spine surgeries. My aunt having 9 to 11 cervical spine surgeries and the last one killed her when she contracted MRSA. So just because ours looks is a little different don't think for a second that it is any better or easier on us then it is on you. By the way my geneticist told me you can pass it down to your kids. It is a genetic disease, so I don't know who your talking to. 65% of Klippel Feil's are women, which means 45% are men. You might want to do some research.
It could be as you say or it could not. Genes are not written in stone,they can be altered.A good diet free of dietary estrogens such as a plant based diet I believe could help in this. Obviously I dont have any proof but the tieing of klippel feil to urethra anomalies in males which is proven to be attributed to insufficient testosterone signalling during fetal development could be proof of this.
Epigenetics is a relatively new branch of genetics that has been heralded as the most important biological discovery since DNA. Until recently, it was believed you were stuck with the genes you were born with. But now it’s known that your genes get turned on and off and are expressed to greater or lesser degrees depending on lifestyle factors. This is a very new science and hasn't completely understood, let alone on a syndrome that has had little to no current or modern research, they don't even know why it happens to one child and not to other siblings. Since KFS affect fetus in the first few weeks of fetal development all of us that already have it, there is no gene therapy is going to unfuse our cervical spines. I have 2 brothers and a daughter and none of them have it. But my maternal grandmother and my mothers twin sister and myself all have the same identical C2-3 congenital fusion.
Urethra anomalies in male, WHAT? 65% of KFS is in women, So what would be the cause of KFS in the majority of the KFS population? My father's family has no trace of KFS, But I can physically trace it to the women on my mother's side of the family. I will ask my geneticist Thursday when I go see him. Not a genetic counselor but a real MD geneticist. And if it was a insufficient testosterone problem, both my brothers would tell you that their little sister have more testosterone then the 2 of them combined, as proof I am much more aggressive and at times brutal and far too many times been told how big my balls are by my actions which screams testosterone plus my hormone test prove I have a higher level of testosterone then I should have. So I would say that your theory is flawed. They don't know why the gene spontaneously changes in the first few weeks of pregnancy causing KFS . From all my research there is no current research is being done to understand KFS. So we will all have to wait until medical researchers either accidently figure it out or feel compelled that KFS is worth investigating.
I understand your doubt, however this is not how appropriate hormone signalling during fetal development works. Getting the appropriate amounts of testosterone during fetal development as a girl could actually make you more feminine as a child and an adult.Testosterone has a role in women too, and its about the balance and ratio of the hormones which influence behavioral traits.For example ,appropriate testosterone signalling while in the womb could enable you to have a stronger estrogen producing system as you grow up, which would make you more estrogen dominant,thus more feminine.This is how testosterone works on girls ,it doesnt work the same on both genders. If then say you didnt get enough during fetal dev, you could have a weaker female endocrine system, which means less estrogens,but your testosterone production would be the same,so that would mean being more aggressive and less feminine.Even if you reject this theroy,animal products dont just have estrogen in them, they also have testosterone and IGF-1.And as you describe to me your hormones seem to be a bit abnormal for a female,thats showing that yur horones where somehow distrurbed while in the womb. The behavior you describe that you are having is further proof that I might be right. The matter here isnt whether im right or not, it is to see if we could help ourselves by understanding how different things influence us and our offspring. If what I said is true a mother who wants to give birth could benefit her child immensely by avoiding milk, cheese , meat(although less heavy in hormones than milk and cheese) and seafood (dioxins, endocrine disrutors, same story) and eggs( even they have some),and thats for an extended time period.There is the problem that the toxins found in fish take up to several years or decades to clear from ones body, so preferably never touch fish(I know it sounds crazy but based on science thats the safest move to make) .This is all im saying, and im saying its good to keep that in mind, if you want to have a kid and give it a lower chance to have the same problems as you do.I have klippel feil too and I find that I can be more sensitive and introverted than other people, although im tall and otherwise exhibit healthy masculine traits,which could be due to less test signalling in the womb. PS Im not saying you can heal the fusion you already have with diet,thats stuck with you for life, unless science comes up with some amazing reconstruction surgery some years for now. You could make your skeletal system stronger by eating healthy though.
I think you missed the point. Like I said my mother doesn't have it but her TWIN sister does have KFS. Which means my grandmother's hormone levels would be the same for both daughters at the same time and yet what one's girl got more than the other. I mentioned my hormone levels are high but my mothers is even higher. She is 66 yrs old and only started menopause 3 years ago, my grandmother she was 64 yrs old when she started menopause and had her last child at 48 yrs old, hell my mom only stop producing milk when she started menopause and my baby brother is 36yrs old. I'm 46 and started menopause already but only due to trauma from having my neck broken for the 3rd time and but my testosterone levels haven't decreased as much as my estrogen levels. The fact that my grandmother had it and she is the 4th child out of 8, one every 14 to 16 months and she is the only one that has it, my aunt is 3rd out of 6 children and she is the only child that has it and I am 2nd child out of 3 and I'm the only child that got it. If it was just a hormone it would most likely affect 1 or 2 genetic markers not 4 or 5 markers.
Mutations in the GDF6, GDF3, or MEOX1 gene can cause Klippel-Feil syndrome. These genes are involved in proper bone development. The protein produced from the GDF6 gene is necessary for the formation of bones and joints, including those in the spine. While the protein produced from the GDF3 gene is known to be involved in bone development, its exact role is unclear. The protein produced from the MEOX1 gene, called homeobox protein MOX-1, regulates the process that begins separating vertebrae from one another during early development.
GDF6 and GDF3 gene mutations that cause Klippel-Feil syndrome likely lead to reduced function of the respective proteins. MEOX1 gene mutations lead to a complete lack of homeobox protein MOX-1. Although the GDF6, GDF3, and homeobox protein MOX-1 proteins are involved in bone development, particularly formation of vertebrae, it is unclear how a shortage of one of these proteins leads to incomplete separation of the cervical vertebrae in people with Klippel-Feil syndrome.
When Klippel-Feil syndrome is a feature of another disorder, it is caused by mutations in genes involved in the other disorder.
I was diagnosed in 2013 with KFS.
so what's your case?
Found out my son has this his 16 months
My daughter haves kFS c1-D4
You look fine to me
Great video. But If anybody else wakes up and they can not move-please go to the emergency room and not the chiropractor.
Would you date Big Ed if he was a gentleman?
you may not pass it to your children because it depends, have your self checked at a genealogist to make sure it's not in your genetics because that's what my doctor told me. Plz check and don't lose hope
God love u
Klipp I have
This is my name is Brian Meyer I just got diagnosed with klippel file syndrome I am 62 years old June 25, 2018 I have accomplished so much over60 years I was a rugby player soccer player cross country player track and field ping-pong player I jumper and seven marathons in Boston marathon 1994 in 40 years ago was pronounced dead on A1 a in Daytona Beach Florida beat with a 2 1/2 inch rebar The two guys were never found I was in a coma for two weeks and they were to walk or talk again now I’m 62 married 39 years newer one left in my famil The two guys were never found I was in a coma for two weeks and they were to walk or talk again now I’m 62 married 39 years never say you could never do anything just we have this fatal disease we can do all things through Christ to strengthen to me bless America
Turkce alt yazi olsa iyi olurdu
you have an extremely mild case. I wouldn't even call it KFS.
You should go to Orthopedic earlier
A neurologist is the one who diagnosed my 6 year old daughter
You look normal.
So?
Looking normal doesn’t mean you don’t have a disability
Everyone with a disability looks different. I would be happy to show you my x-ray imaging... some disabilities are more visible knternally.
Chiropractors are not doctors. And a lot of times we need to push doctors to be more responsible than arrogantly dismissive.
The fact a chiropractor found that she had fused vertebrae and then told her he could fix it through manipulation??!!! What a charlatan 😤
I have the same. I want to marry you.
You resemble ivana baquero
Have you found any treatment successful?