For many people affected by Charcot-Marie-Tooth (CMT) and hereditary neuropathy, the first signs and symptoms develop in childhood or early adulthood. Progressive weakness and loss of muscle control in the hands, feet, arms, and legs are among the most common symptoms that can prevent employment. Deformity of the feet, hip dysplasia, fatigue, and nerve and musculoskeletal pain may also contribute to disability.
While some people are able to maintain a job with CMT, the progressive nature of the disorder may eventually make it impossible for you to work.
If you are no longer able to perform your essential job duties and cannot find alternative employment, then you may qualify for Social Security Disability benefits with hereditary neuropathy.
Medically Qualifying Under A Disability Listing:
CMT is a form of peripheral neuropathy, meaning it affects the nerves and muscles in the arms, legs, hands, and feet. The Social Security Administration (SSA) has a standard disability listing for this type of neurological disorder.
The Peripheral Neuropathy listing appears in the Blue Book, which is the SSA’s manual of conditions that “automatically” meet program eligibility requirements.
To meet the peripheral neuropathy listing, your CMT must:
• Severely disrupt your motor function and coordination.
• Affect at least two extremities.
• Cause significant issues with walking, standing, reaching, grasping, pushing, pulling, or other activities that require control of your major muscle groups.
The SSA also needs to see in your medical record that your symptoms are persistent despite following prescribed treatments.
Qualifying Without Meeting A Listed Disability:
It can be challenging to qualify without meeting a disability listing, but it is possible to prove you’re disabled by CMT through other means.
The SSA will need to take a closer look at your activities of daily living. This is done through an RFC or “residual functional capacity” evaluation. During an RFC, you and your doctor provide the SSA complete functional capacity questionnaires. These forms ask for details on everyday activities, like cleaning your home, preparing meals, or taking care of pets.
Your answers give the SSA more to work with in determining if you’re unable to perform common and essential job duties. If the RFC shows you’re so limited that you cannot work in any active or sedentary job, then you can be approved for benefits.
Supporting Your Claim For Benefits
Medical records are the key to approval, whether you meet the SSA’s peripheral neuropathy listing or must go through an RFC evaluation.
To be found medically eligible, you must have specific medical records including:
• A definitive CMT diagnosis, achieved through genetic testing, a muscle or nerve biopsy, or similar means.
• Records of the progression of your symptoms.
• EMG and other neurological exam results.
• Treatment and symptom management records.
A detailed statement from your physician can be a tremendous asset in your application for benefits as well. He or she can help you clearly communicate the full extent of your CMT’s affects on your everyday life, including how it limits or prevents your ability to work.
Applying For Benefits
With CMT, you may be able to qualify for benefits through one or both of the SSA’s disability programs. A separate application is necessary for each.
• When applying for SSI, you must participate in a personal interview with an SSA representative. This is usually done at the local office.
• SSDI applications can be completed at the local office too, or you can submit your application online, via the SSA’s website
My son is 39 and first showed signs of CMT around age 18. He was able to work until the neuropathy in his feet made it impossible. He has been turned down 4 times for disability. Is there a trick to getting disability benefits for such an obvious disability ? We are at our wits end!
Have you been able to get accepted yet. I have cmt and started this process in mid 2016. I’d be willing to share my experience with you offline and It may help you.
Hi Joe,
My name is Lisa. I’m 48, but diagnosed with hnpp at 27.
My symptoms have gotten significantly worse in the last two years, where my arms and legs are almost always numb and burning for several hours every morning. This significantly lengthens the amount of time I need to get ready to get to work on time.
Also, I have difficulty working on a computer, holding silverware, combing my hair…seems like everything!
After walking a ways I feel a foot drop.
I feel like I’m losing cognitive ability (I have sleep disorders also). I take Cymbalta for nerve pain, antidepressants, and Ambien.
I’m just beginning this time of experiencing daily disability and I feel like its affecting my job. I’m worried my employer notices I work slower and can’t keep up.
Any advice as I start down this disability path?
Hi. Wondering how you are doing now.? Our stories are similar. I am hoping to communicate with somebody , anybody, that is like-minded In what we’re going through. I’m very frustrated. I feel your pain. Wondering if you’ve got any relief since writing . Know my heart goes out to you. To all of us riding this pain train of CMT. Please get in touch if you’d like to connect. Stay strong fellow CMT’ers! ❤️
Hi Gina and everyone,
I am 28 years old and I was diagnosed with CMT in 2019.
Symptoms started showing in my late teens but I remember in primary school age and younger I couldn’t run properly and was awful at all sports and just didn’t understand why?
I have pain in my hands, arms, legs and feet also get numbness and burning pain legs and feet or really ice cold feet. I have foot drop and wear a brace.
Since the diagnosis I have felt very alone, confused, very afraid (present and future) and depressed.
I have always suffered bad with depression and anxiety and since CMT diagnoses it’s all got unbearable.
I don’t know anyone who has CMT and it would be nice to talk to someone who has it as I feel my friends and family don’t understand.
Hi my name is Debi I have CMT. I denied it for years in having it but it got so bad now I have to admit that I have got CMT. I guess I was embarrassed because no one I knew you had it.
Hey Gina, my name is Donnie I’m 47 and was diagnosed at 28 years old. I have had several surgeries to help with my walking I also wear braces to help me walk. My oldest son is 27 he also has CMT. I saw your post and just wanted to let you know I understand your pain and frustration.
Joe, my son is 46. He has CMT, along with his biological father and Uncle. Any information you could provide to help him in pursuing disability benefits would be helpful! TY! Happy New Year!
Hi Joe hopefully you will get this message. I am trying to get approved disability as well and wondering how you were able to accomplish it. Thank you
Hi Joe hopefully you will get this message. I am trying to get approved disability as well and wondering how you were able to accomplish it. Thank you
I am 50 years old and just told my job I’m taking a long term of absence. They downgraded my position I had for 10 years because I can no longer type and just found out last week that I have to have major foot surgery due to CMT. I have been having issues with my shoulder and have an appointment tomorrow with specialist that due to financial reasons and a $65 copay I’ve cancelled. Any advice would be helpful I have not started my application with Social Security. I have just taking a leave of absence from work last week to keep my insurance . But I need file for disability. I would appreciate any advice Thank you Stacie
Dear Stacie please call my phone and I will answer àny qustion you may .john
Dear John,
I saw in your reply to Stacie’s question you might be able to answer additional questions regarding the SS disability process. My disease progression and age are similar to hers and I was hoping you might be able to answer some questions for me as well. Thank you.
Hi my husband Michael has cmt and this year has gotten much worse. Would like to know if any one with cmt has received the vaccine?
My name is Mary. I am 40 yrs old. I got diagnosed with CMT a few months ago. My father had it and my cousin had it and my 18 yr old son has all of the cmt symptoms. I have severe nerve damage in both of my hands/ arms from fingertips to elbows and peripheral neuropathy. I have problems gripping things, dropping things and am starting to have balance issues. I sleep with wrist splints. I have numbness in both my hands. I am going to work until I am no longer able to. I understand how frustrating the disability is. It affects fine motor skills. I can’t button a button 😒.
Hello Joe,
I would like to know if you would be willng to share your experience with me with regard to your getting approved for SS benefits. You may reach out to me at my email address
Thank you,
Susan
Jose, I have been working on this too for 4 years. I have been financially destroyed. I am at my wits end and my lawyer is doing everything she can. I am losing all hope and would like to talk with you?
My name is Elizabeth I’m 39 I was diagnosed with CMT at the age of 9 and my first surgery when I was 13 I have had since then 8 surgeries on both my feet and currently unable to walk with out a shoe on and no more the 10 feet without my feet giving in and my legs buckling falling to the ground. Currently with 12 screws in each foot and the hardware popping out of feet up next they want to fuse my bones and put me in a wheel chair for life. All while I’m a single mom trying to hold a job that I can’t walk from my car to my desk to even perform my duties required as my motor skills just aren’t working anymore, so how am I able to take care of my daughter who also just had her first surgery on her foot this year. She also diagnosed with CMT at the age 3 and her mobility was 20% and now only 50% on a good day. I was denied state disability and almost became homeless recently because I couldnt get up to go to work my feet, legs and body have finally said nope you aren’t walking anymore which then led to cardiac arrest because of the stress of trying to pay my Bill’s housing etc i had a heart attack in Nov and still denied by disability. Once home and released from the hospital. Still denied as if this is their money and treated so rudely in person by a disability representative. Not even listening and in a hurry to call next person when I want even done speaking. I have worked for 20 years with my disability
After every surgery pain or not I had no choice but to having to call out of work on days my body just couldnt get out of bed because I’d hit the floor, but still paying into SSI SDI even more so because of my condition and they denied me. I currently have Zero income coming in now. How can I get help and a decent person on the other end who actually will do there job and not just another order taker, or attorney just taking my money and two years later denied, most representatives I’ve spoken too are not willing to help, listen, or fight for what’s right. Instead put me on the street with a disability and a daughter who also is disabled and can barely walk herself. This is our system and you wonder why the suscide percentage has increased 32% from the ages 18 to 64 years of age. I need help as this is my last hope before I’m out of my savings and on the street with my daughter.
Elizabeth I feel so bad for you I’m sorry the government isnt doing their job to help you when u clearing are in need of their help. Do u live in the USA or canada? I have 2 girls with cmt as well and 1 without it. My middle shows signs of pain and my youngest is too little to tell me anything yet. I know ur post was a from a while back now but I hope ur doing better now financially and emotionally 🙂
Yay!!! I just got diagnosed!!! Feels like I won the lottery or something. Not sure how to process all this yet, obviously. What’s hit home hardest is the fact that I’ve got an eleven month old baby girl. So unexplainably cute. My imagination runs wild when I think of her future in this world. Personally I feel lucky because I’m 45 and have never really shown signs of cmt. I’m wondering now what kind I might have, and the conversations I’ll be having with my baby girl on the topic in years to come.
Where do you live Elizabeth? Have you gotten any help? I’m not really excited about the prospect of getting help from the system in years to come. My thoughts are with you. Freaks me out about humans is that they’re great at masking the real issues that are involved with being human, referring to the “system” that you spoke of in your words. I’ve been angry at the driving force behind the “systems” philosophy for many years, and it freaks me out when people look back at me all glossy eyed(as if they’re not able to comprehen) when I explain my hate to them. Perhaps it’s because they know I’m talking about them? I’m not sure.
I broke my arm once, and was curious about dredging through the healing process as alone as I could be, just to see how the world was set up for somebody who didn’t have a choice. Turns out that it can be very hard.
Now I get to go through the process of it with my daughter. I wasn’t ready for the feelings of going through it alone with my baby girl, but I’m guessing it’s going to be coming.
Elizabeth I just read your story and it breaks my heart. it has been quite some time since your post and I hope that you and your daughter are ok. I just want to say that if you are having mental health issues, and clearly it takes a toll beings that you mentioned hopelessness and suicide, then you can apply for disability for it. for some reason the social security administration approves claims for mental health much easier than physical. I know it seems like a backdoor approach but it’s worth a shot. I have CMT and bipolar disorder and I got approved for my mental health condition. my son also has CMT and he got denied. Just a suggestion😏
The sparrow is just a bird… but the bible indicates that we are worth more than many Sparrows to the Lord. So if His eye is on the little bitty Sparrow, then you can know without a doubt that HE watches you. He loves you. He is going to take care of you!
Joe are you still on this website? I am starting the disability process in May
Lori, I was 38 when I started this process and now I am 42. I have been denied 3 times and had to reapply. Financially, I am Destroyed. I would Love to hear from you offline and see how your son is doing in the process. Please let me know if you can talk?
My ex husband was dx’d When he was mid 20s and applied 2 years and got it right away. He is now 46. My child is now showing signs and is progressively getting weaker in her legs. I’m wondering if a child would qualify for ssa with a doc of cmt.
Hi my son has just been diagnosed through nerve tests as well as blood DNA linked to his father’s side IV been fobbed off since he was 18months old hypermobilty several bouts of serial castings special boots he’s now really bad falls over air has lost all feeling in feet and now hands shake both badly effected now got urgent 8hr assessment at gosh which is great however I’m on some hardship at the moment only myself and two great kids IV applied for DLA my son is suffering so not fair we have a local pool as he is great in water but alas can’t afford it but apart from finances no one really knows enough where we’ve been only information on the internet he’s supposed to have ot and pyhiso in his school and nothing has happened he dose his stretches and special excersises but he suffers from pain and cramps he’s a size 5 which he has been for four years now his instep is so high and he’s now 5,4 he’s posture is now becoming affected what I’m basically saying is anyone whom could advise us with information to help him understand more than I can find from internet thanks for reading
Hi Rachael,
We are sorry to hear that your son is experiencing pain and cramps. We can do our best to try to connect you with someone to talk to. Where are you located? Please feel to check out our CMT webinar library below as well: https://www.youtube.com/user/HNFoundation/videos
I know what your talking about! I’m going thru same thing with my son same age and it’s been years we have been trying to get him some insurance , I have spent my last penny of retirement and I am disabled myself but wouldn’t think about myself until I get my son taken care of God help us.
I would like some advice on getting approved I have weakness in my arms I have severe leg pain I can be on my feet for more than 1h without pain cant work full or part time job
Is there any lawyers that specialize in CMT that can help me get my paperwork started for disability
My husband has been turned down 4 times also. He has had it since he was born. Had trouble all his life but his mother and sister had it also and they were told there was no treatment or cure so he just didn’t go to the doctor. Therefore he was denied. he is 60 now and still trying to get disability. It is bankrupting us trying to make ends meet.
Hi, I’m a 49 year old woman and just been diagnosed with cmt1a. Does anyone no if I’m able to get a blue badge. Paula.
Hi. I am 26 years old from india . First shows sign with cmt around 9 and he was able to work until the neuropathy in his feet made it impossible . Now am can not walk . In on wheel chair . Please provide to me your country visa for cmt treatment.. am enjoy beutyful life. But today am can not walk
There is no treatment or cure for CMT so why do you want to move
Hi I’m turning 32 in January and have just been diagnosed with cmt, I first had signs in my hands I could barely close them without pain. I thought it was carpal tunnel syndrome as that’s what my doctor thought because I was pregnant with my third and had never happened with my other 2 pregnancies. My daughter is now 5mths old and I can close my hands but have limited strength to squeeze. Also i was born with erbs palsy when I was born my left arm didnt work my mother had to let me cry (as babies move their arms when the cry) as a form of physio. My not 100% clear as what my life is going to be like with cmt as my doctor didnt really explain it and is sending me to a specialist and my family doctor isnt clear on it either, does anyone have more info. Or advise? Not sure if it’s getting worse in my legs as the past few days my shins have been killing me to walk or put boots on or off, anyone had this pain in their shins area
I am 67 and i have had CMT since the age of around 12 years old.
Muscular waste was becoming noticeable as i grew older but i perserved in my work place and only stopped work when i reached pension age. At this point it became very difficult to continue working moreso because i have been linked to the construction industry. The main thing through most of my life was to be positive minded and committed to the reality of being the head of a family of four. Today i have become pretty weak in my upper and lower limbs and fatigue has become a big issue. Remaining as i have positive is the key and try to put your ailments behind you.
I have had cmt for 2 years along with osteoarthritis, drop foot on left foot, hammer toes, high. arch on right foot. Numbness in both feet. I have been denied disability one time. Left calf atrophy. Pain in both shoulders. I’m painfully aware that their is no cure aside from divine intervention.
I am a 64yr old man and have had chronic cmt disease for 12 yrs. I also have peripheral neuropathy i also have historical nerve damage below the waist from a crush injury from being caught up in a 3500 ton press flywheel when i was 23yrs and i still am assessed every 3yrs and every time i have to appeal and go to tribunal to get my mobility and care allowance so don’t be down hearted just go through the motions and hopefully all will be ok.
Hi, I have been diagnosed with hnpp in hands and cmt in feet. In addition to drop foot, I can’t lift big toe. Dr says both knees and hips are in awful condition. Says I was born with a fractured vertebrae in lower back. Dr advised me seek disability. Any advice? I am 47. Thanks so much
I am currently 20 years old, diagnosed with CMT when I was about 15, but decided to object from genetic testing till I was ready to have kids. I was part of Stanford medical when I was 16 and had 3 surgeries on each foot to help with my tightness in my feet and high arches. I had a plantar fascia release, a muscle transfer that I don’t really remember what it was for, and an achilles tendon release. Now, that I’m 20 I am having trouble, I have bad foot drop in both feet, little to no sensation anymore in my toes and balls of my feet, and have severely reduced blood flow from my knees down. My feet are pretty much red and my toes get purple. In my hands, I can feel my thumb muscles becoming weaker, and the dexterity in my hands is sub optimal to say the least. I started playing guitar 6 months ago, which I noticed an increasing dexterity in my hands. I have not applied for disability and generally feel lost. Yes, I am able to play computer games for hours on end and practice guitar, But I am terribly sore when I go to bed. I probably could hold a job, but my quality of life would revert practically to zero, because I wouldn’t be able to do my hobbies and things that bring me joy. The fact that I have to choose between enjoying my life and working is sickening. I am only 20 and on my parents insurance and was only able to hold a job at a gym I was working at for 8 months because it was taxing on me to where I was having problems doing things that I enjoy. If somebody knows how a 20 year old can get on disability living under my parents roof, under their insurance, then please help. My parents have been supporting me for a while and since we live in CA, it would be nice to move out or atleast help with rent to relieve my parents of that stress, and to just have money to enjoy my life and help with school. Thank you for reading and have a nice day.
Hello, I have had CMT since the age of 13, it has affected my school and social ability,, i have complete drop foot with no movement at all in ankles or toes.
I also have significant lose in strength and use in my hands with continual shaking making writing and even opening the front door or car door a two handed job to steady them at times,,,
At the age of around 23 I was diagnosed with the condition that i had suffered with up until that point quietly without ever discussing my struggles with medical profession, until my new doctor said to me as soon as i walked through the door, and eventualy and was given walking aids made of hard plastic to lift my feet to stop me from tripping and falling whenever i walked..,
The supports where very much appreciated and felt brilliant to walk normally for want of a better word.
But within a very short time, walking with the aids became extremely painful cutting into and applying painful pressure points on the foot structure that is lacking any muscle tone as it is, and on top of the existing pain it became unbearable and lost what little muscle tone i did have and then could not walk unassisted and still can not due to the total immobilisation of the foot.
Things got considerably worse over the next few years.
I spent the next 7 years claiming benefits and doing some voluntary work that was manageable for me.
I was also working on making leg supports that where not of solid construction using different tapes and soft support material, but my problem was longevity of the supports i made and the supports would break down quickly having to resort back to the solid construction supports.
After alot of arguing back and fourth with medical profession and showing them what i was making and the benefits of the flexibility they agreed to make them and i was finally provided with a support that is flexible and moulded from same material/flexi plastic that back brace supports are used in recovery of broken back patients.
They used the 4mm thickness brace material but have had new ones made from 5mm for extra support and tapered of to the edges for more comfortable fit
I wear these in between two layers of thick socks to cushion my bones and a good pair of lace up boots or a good pair of trainers for light exercise(cycling is good to keep all other muscles in good shape, it took me a long time to get my fitness back but i got their.
I still have a very distinctive walk and struggle immensely with pain and mobility but offers just enough support to hold my feet enough of the ground from the extreme drop foot.
They are made from a mould taken straight from my feet as they are deformed and of a irregular shape.
After many jobs and retraining i went back into a self employed job where i can pick my own hours and work at my own pace in the building industry, I have been working again for over 6 years now and my girlfriend now works with me and offers great support at work and after work as i can not get around house without the supports.
Not working will destroy your mind, their is something out their and with the right support claiming benefits is the last line of defence.
I was signed of work for life as my CMT was severe and I was signed of by specialist benefits doctor, the only way you can claim the benefits to be honest is by assessment from a specialist in that field.
I signed myself of the benefits i was receiving after receiving my new leg supports in the pursuit of a job that i can manage, it has been a difficult journey, but my health and well being is greatly improved,,,fatigue, pain in legs and arms, unusual walk, shaky weak hands are all still prominent in my life , but support is the key from the medical Profession and Family,
This is my Story
I have more ideas for walking aids for around the house, and better supports for outside use, but the supports that i have designed and am using are available on request from a doctors referral and speaking to the professionals.
All the help you need is available to keep you mobile, let them know what will help you have a fuller life and they can make it happen.
Maintain some form of exercise that is low impact on legs and arms even if it is just laying on your back to exercise.
small motions using my hands is difficult and causes cramps, so i use tools that allow my hands to have a firmer grip.
I still drop stuff and trip/fall.
But through work i still have a full life.
I now go fishing and stay as active as I am able, it is painful but it is a life
Without work I just existed
I was depressed, felt sorry for myself, was homeless at times and lost all grip on life.
If you read my previous comments you will see i did everything within my powers to better my situation, and make the most of a really bad horrible condition as thousands are.
CMT is awfull, its painfull, its soul destroying and debilitating, but it is not the end of your life for those that are just receiving their diagnoses or those that have lost hope.
You can make changes, get correct pain management when needed and correct walking aids for your specific needs.
These are my thoughts,,,and i hope this may help a few people stay positive.
STAY AS ACTIVE AS YOU CAN, USE THE WALKING AIDS/SUPPORTS THAT ARE FLEXIBLE.
STAY POSITIVE.
RETRAIN IN ANOTHER LINE OF WORK
VERY LOW IMPACT EXERCISE OR SPORTS
The medical profession can only do so much.
But help is their for those that NEED it and WANT it.
I was diagnosed with CMT-1-A in 2014. I have misdiagnosed in my life with juvenile arthritis as a young child and plantar fasciitis while working and walking for miles and miles a day. I have never been able to run; waterski; snowski; roller skate, etc. Finding out that I have CMT explains so much of my life. I am gratefully for the diagnoses. I have determined my pathway to health is the natural direction. I do not take any prescriptions for CMT. I take supplements and exercise and eat for my blood type. Recently, however, my vision is pretty blurry a couple times. Yesterday, was one of those days. Today, my research revealed eye sight can be affected by CMT. I have severe digestive problems as well, which can also be linked to CMT. CMT affects the whole body.