Applying for Disability with Hereditary Neuropathy or CMT

by | May 19, 2016 | 75 comments


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

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  1. John Bianca

    I was diagnosed with CMT eleven years ago. I told my boss ( Sheriff) that I needed a day off to see a neurologist.he said sure. At that time I was the agencies Undersheriff / Major. I was diagnosed with CMT, and the only symptoms I had was if I closed both eyes I fell over. The doctor told me my CMT could lye in regression for years and never cause me problems. He filled out my fitness for duty sheet, clearing me to work. I also had one from the Chief Doctor of our local hospital also clearing me for duty. Sheriff asked what I had, I never lied to the man in 24 years so I told him what I had. Told him it was not of immediate concern.

    When I came back to work the next day and was called into my one and only supervisors office the sheriff. He said he was reading up on my condition, and he was prepared to offer me three choices 1. I could retire, 2. I could quit, or he would terminate my position. I had 25 commendations in my file, was the first officer in Southern Colorado (highest award a Colorado Cop can get). I felt boxed in I didn’t want to write quit or fired on my next job application , so I Retired.

    I started walking with a cane 8 year later. Now it has attacked both my legs and feet. My arms and hands. I get everything from lighting bolts in the legs, to burning in my toes and heels. Some times my hand shake so bad that I have other people open folded documents. When I retired I applied for regular SSI. They told me that I could never get disability coverage though Medicaid. Anyone know that now that it has gone full blown to a point the I can’t afford all my meds. Is there any way to change my status to Medicaid?

  2. Joyce Antons

    Hello Alice, yes I have CMT and have gotten both the vaccine shots and have had no problems . I feel more protected now. I am 80 years old and just got a pacemaker which tells me I’m still in the battle come hell or high water. I’ve read every ones story and can relate to most after all these years..so keep the faith and he will be there for you..God bless

  3. Jenny Lings

    Hi my name is jenny and I have had cmt most of my life. Have had all the nerve tests xrays etc. I am now 69 and find it so hard to walk and my balance is terrible have to use a crutch to walk my dogs. My feet go over on the side so i walking on the side of my feet not the soles. I have had 2 ankle fusion ops cancelled and keep on at my gp to be referred again but haven’t had any luck with that. I can see before long I will be in a wheelchair and that upsets me as I feel it could have been avoided if I had the op. But I suppose as im an older person they can’t be bothered.

  4. Karen Sconyers

    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.

  5. Kristian Loomes

    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.

    The medical profession can only do so much.
    But help is their for those that NEED it and WANT it.

  6. Kristian Loomes

    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

  7. Dylan

    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.

    • Jacki

      My son is 20 also. He is struggling really bad. He was diagnosed in 2018. He had 2 very physical jobs that he has had to give up. He is getting depressed about the loss of money, but he physically can’t do the work. He wants to work and is looking for work that is less demanding. He also was diagnosed with Covid in December. He is having trouble with droopy eyes since then. I feel for you, as well as, my son. It’s sad to see what y’all are going through at such a young age.

    • Jessica

      Hi Dylan, I really relate to your story, all the same symptoms and surgeries. I had I since birth and my first sergers and the age of 2 and I’ve lost count of how many I had, but I can relate the the loss of social life because I’m just trying to survive in a “normal life.” I’m 30 now and I did a physically demanding job for over 10 years, I did it because that’s what you do right grow up go to college and start a career. I loved my career and how hard I pushed myself daily, but now looking back at it I think of what that really costed me. As my life was revolved around sleeping and working, I would drive home and not even have the energy to walk inside so I’d just take a little nap in the car to regain strength. No social life for family and friend not attending and events because I need to conserve all my energy for work, or not doing anything before work to conserve energy, but also can’t do anything after work do you lack of strength. Anyway I would be interested to hear more of your story.

    • Ashley

      Hello Dylan with having surgery did it help at all? I’m considering surgery or braces.

  8. Mark

    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

  9. andy harrison

    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.

  10. Jeffrey Maroney

    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.

  11. Eugene

    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.

  12. Katelyn

    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

  13. Sandeep singh

    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

    • Crurophilous

      There is no treatment or cure for CMT so why do you want to move

    • Joyce Antons

      Hello Alice, yes I have CMT and have gotten both the vaccine shots and have had no problems . I feel more protected now. I am 80 years old and just got a pacemaker which tells me I’m still in the battle come hell or high water. I’ve read every ones story and can relate to most after all these years..so keep the faith and he will be there for you..God bless

  14. Paula

    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.

    • Britt

      Yes I have one I got it from my neurologist

  15. Lori Bingham

    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!

    • Joe scarduzio

      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.

      • Lisa R

        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?

        • Gina B.

          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! ❤️

          • Georgie

            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.

          • I denied it for years in having it but

            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.

          • Donnie Enfusse

            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.

          • Christina

            Hi Gina my name is Christina I got diagnosed with CMT at the age of 28.After a motor vehicle accident. It has been a struggle for me in many ways I am only 33 now and have a hard time walking and functioning. I have a wheel chair now and it’s frustrating and hard to learn how to use it and people constantly asking why do you have a wheel chair. Nobody understands even doctors. I wish I knew someone who could understands what I am going through. Ease reach out

          • Amy Duff

            Well one of the very 1st thing to do is go ahead and retain a disability lawyer….they do bot collect payment unless you win….they are very knowledgeable and the state I live in its worthless to apply unless you have a lawyer

          • Tab E

            I am dealing with this illness also.. I had a different issue for about a year or so before the neuropathy started so I was curious if any of you may have experienced something similar.
            I had what my doc referred to as restless leg syndrome and lack of circulation. If i sat down for more than 5-10 minutes my legs would fall asleep. Extreme pain in both legs esp at night and the pain would wake me and i could not get comfortable. Once that went away I had this awful pain behind my right knee ( in the bend)
            after a while the pain behind my knee would start up and it would move to my right foot then some time later it was suddenly in both feet! Sometimes it would feel like stepping on pins and needles, shooting pain like electricity or a ⚡️ bolt going through me, constant pain on heel and from toes to arch on the bottom of feet, extreme burning pain that would literally make my feet really red and hot to the touch. In the mornings the pain was awful and was difficult to take any steps at all. Push through the pain and it would let up a little to move around and in the evening hard to walk again! Then about maybe a year later this awful stuff moves to both of my wrists and hands. I could not even bend my wrist because the pain was so awful it was disabling. I could not brush my own hair, get dressed by myself, could not drive, loss of muscle control while trying to pick anything up! I also had pain so awful and nothing helped the pain and i’d notice my veins in my wrists on the palm side were hardening! A few times they were so bad they looked and felt petrified.. the morning after my wholes wrists were bruised around my veins.
            About the last 6 months that awful pain from behind my right knee has also effected my right arm behind the elbow ( in the bend)
            My vision has went from 20/20 to awful but it changes throughout the day
            I’m having the worst hot flashes… i’m so hot the heat radiates off me even if it’s 30° and i’m wearing shorts and a tank
            My teeth are making too much plaque, dentist does teeth cleaning and 4 months later it looks like it hasn’t been done in 50 years! this created dental issues and one tooth just got skinnier and skinnier until it broke while eating a mushroom!
            I’ve always been easy going and suddenly i’m very angry a lot and with no reason to be upset.
            I’ve started having extreme anxiety and awful panic attacks.
            I have palpitations now and once it was so bad it felt like someone punching my chest from the inside and the next day my chest was bruised.
            I was diagnosed with Lupus ( my father had lupus as well)
            My daughter is diagnosed with Hashimotos
            Last couple years my blood work shows the auto immune disease is gone
            however my ALT levels are high – appears my liver isn’t turning food to energy. My pcp said she wasn’t concerned about the alt being high but one of my main complaints is extreme fatigue! I have a hard time getting out of bed. I do not want to get up, no energy! zero energy ! Can’t focus to complete any tasks! Brain fog, memory issues!
            Does this neuropathy destroy our entire body!?

        • Gloria

          I have CMT, for about the last 20 years I have been taking NIACIN 500 mg. 3 (1500 mg.) at breakfast n dinner. At first for awhile you’ll feel a burning sensation. Uncomfortable, but doable.
          A cardiologist told us about NIACIN in 2008, 1996, I had a massive heart attack 25 percent of my heart died. Been taking the niacin for 25 years.

      • Shirley Thompson

        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!

        • Mandy

          Hi Georgie
          I saw your post & completely understand how you feel. I too was horrible at sports & didn’t get it. I wanted to be a cheerleader so bad but couldn’t do all the tumbles, jumps etc. Now that I’m 48, my calves spasm alot & my neck hurts constantly. My whole family has this stuff, but my depression and anxiety outweighs anyone else’s & they don’t understand it. I pray all of you find some sort of relief. Deep breathing helps me sometimes.

        • Jessica

          Hey Joe, did you get a confirmed diagnosis. From what I know CMT is a mutation of the X chromosome, meaning a male can not pass it to a son as he would have to pass on his y chromosome and the females only give X chromosomes. There is that possibly the mother was also a carrier. Is the uncle that also has it on the mother or father side of the family? The only reason I even am bringing this up is because I found all this out doing a biology tracking of my DNA and we always thought my brother had it too, after I found this out he got genetically tested and turns out he has MS!

        • D. O.

          Wow. I just saw an i terview with Alan Jackson (Country Singer) who is currently sharing his CMT Medical Diagnosis with the oublic.

          I have never heard of CMT but have been working with Medical Specialists (Neurologist; Neuro Physical Therapist; Spine Specialist) with Lab Tests, CT Scans, MRI’s and XRays trying to understand my Medical Mystery.

          Falling, falling, falling and now lissing strength in one leg and numbness in arms.

          I seem to be following in my fatger’s Spinal Stenosis, Pheripheral Neuropathy and Nerve Damage issues.

          I am scheduled for an EMG / Nerve Conduction Study to add more information to this perplexing “Trek.”

          Are any of the above Tests and Procedures similar to what it rakes to collect tge Info Data needed for a CMT Diagnosis?

          Are Individusls otherwise healthy separate from the Nerve & Muscle decline?
          Thank You All. D. O.

      • Janelle Clayton

        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

        • Caren Farmer

          Hi. I’m Caren. I have had symptoms for decades, and finally got diagnosed with CMT this past Spring. I need to apply for disability. I would appreciate any tips. Thank you so very much.

      • Janelle

        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

      • Stacie

        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

        • John omeara

          Dear Stacie please call my phone and I will answer àny qustion you may .john

          • Dianne Heaton

            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.

          • Alice Vayner

            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?

        • Mary Ellen Faircloth

          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 😒.

        • Amy Duff

          Does anyone live in Va…and does it differ from state to state??? I do know the best way to get disability and the quickest is with the help of a disability lawyer!!! Ive had cmt since 3…started having surgeries at 4 years old im 47 now….all 3 of my children have it also….id appreciate anyone who’s had it a very long time and your experiences!!! Thank you…..

      • Susan

        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,

      • Richard Foster

        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?

        • Jill

          My doctor is extremely upset that I have yet to be approved for disability he has outlined how it has gotten worse over the 23 yrs and the quality of life has been affected after 25 yrs of working two jobs and cutting back had to be to the point of non employment with the foot drop foot braces lack of balance pain on top of scoliosis and advanced degenerate disc desease though out mine spine cmt 1a pmp22 I have tremors hand cramping and I have been trying to get it for 5 yrs

      • Elizabeth

        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.

        • Katelyn

          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 🙂

          • Cheeko

            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.

        • Jason

          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.

        • Barbara

          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!

      • Melani Catt

        Joe are you still on this website? I am starting the disability process in May

      • Amy Duff

        Hey there I’ve had cmt frombirth…im 47 now and I’ve had an ulcer for. On my left foot on the ball of my foot 6 month ago!!! Pediotrist said need to stay off of feet most of the work day….I was working 70 hours a day. Im in Virginia….any helpful info I would appreciate…im going to apply and possibly hire a lawyer….thank you soo much for any help…..Amy Adams-Duff

      • Brenda

        Hi Joe, I am 51 and have suffered with this since I was a toddler, I had epilepsy.. I have had many incidents and now I understand why.. Of course I was just diagnosed with this Genetic disease. Years ago doctor stated that my problem was Meniere’s disease. I have seen several specialist in the last two months. ENT doctor states I do not have Meniere’s disease. However I do have vestibular disease. I have had a MRI and MRV and it came out okay. I also found out that I have BPPV and moderate stenosis of my crotid artery.. I have been complaining about my knees for years and how I feel like I old lady trying to get out of bed. Feel like I am carrying an elephant on my shoulders. I also was having horrible foot pain and I wear orthotics and has helped. My Doctor just wasn’t listening to me and I was getting very frustrated. I had a real bad spell with weakness and fatigue which lasted alot longer than my previous spells I have had in the past. Which prompted all the specialist visits. I had a drop spell so week I couldn’t stand without feeling like I was going to fall. This lasted fir 20 minutes. It us getting worse getting out if bed and takes alot out if me just to do daily household chores. My whole body just aches, so I have been taking Tylenol like candy and feel like I need stronger pain meds. I cannot drive, have panic attacks and dizziness. I had a concussion 1 yr 5 months ago and Covid last November and feel like I have gotten worse since then. Then menopause hit and I almost feel like it is progressing real fast. My Neuroligist explained that my neurons in my brain are overactive and I have a genetic disease that will progress over time. I have been off work and my FMLA will be exhausted this Friday. I have considered applying for permanent disability. What are your thoughts? I will be asking my doctor about this next Monday.

      • Mark borrero

        I was diagnosed with cmt2 at 5 Years old life’s been rough but never give up I’ll be 28 tomorrow keep pushing 💪

    • Richard Foster

      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?

    • Shelly

      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.

    • Rachael

      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

      • Estela Lugo

        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

    • Carolyn

      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.

    • maurice ricks

      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

    • Alicia poshard

      Is there any lawyers that specialize in CMT that can help me get my paperwork started for disability

      • Britt

        Please let me know I was born with CMT I walked on my toes had surgery on both legs at age 3 r 4. I been denied ssi 3 times. More surgeries when I got older. I’m 31 now and my neighbor that’s 75 years olds get around better than I do 😢😔

    • Bernadette

      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.

    • Martin S

      I was diagnosed with CMT at 15, in 1999. Managed to work for a decent amount of time and then was forced to apply in 2008. Was denied the first time obviously like everyone else. I got myself a lawyer who’s specialty was disability. After about 2 more years of waiting and working with them I managed to get on disability. It was definitely a struggle financially during that time but if it’s what you need, that’s more or less the only way it’ll happen for you is with a lawyer. They do pay out backpay for the time waiting though, but hardly covers what you’ve likely made from working. Good luck

    • Rose

      What you need is a lawyer, they work for you and you will get the disability right away? You don’t have to pay anything to get a lawyer.

    • Trisha

      Hi I have CMT I’m 52 years old I would just like to have someone else to talk with that can understand what I am going through I do not know anyone with CMT I’ve had several surgery hands and feet since I was 16 years old my joints are getting worse hands and feet now that I’m older Are usually just tell people that I have arthritis

    • B Klein

      Continue to seek medical attention with referrals from your Primary Care Physician. Keep accurate records of visits. Have PCP write a letter detailing how CMT affects daily living skills and ability to work. Limited ability is the key. Demonstrate pain and strategies to lessen pain. Good Luck. You can make it (SSI or SSDI) happen!


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