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SSDRC Disability Blog

Why is Charcot-marie-tooth not on the Social Security Disability list of impairments?

I have charcot marie tooth is a form of muscular dystrophy and rare....that damages and kills my nervous system so to speak...I have pain all over, back pain...fatigue...Just feel like energy is drained right out of me and feel lifeless...It causes muscle cramps..My legs and hands...also in my hands I have tremors, drop things frequently....My legs sometimes feel heavy to pick up..I wear leg braces...not only do I get weakness throughout my body but my hands can get where I can't button or pick up a coffee cup without using two hands...I feel feverish at times but no fever...can't stand without hurting more within ten minutes... some days I just lay in my bed and cry because I'm so miserable with it all....not to mention I have other health issues like depression ....I also feel like I'm starting to lose some hearing which can come from the chariot maire my question to you is why is this disease not on the disability disease list? How do I go about trying to get this disease added and recognized as a true disabling disease?

Your disabling condition, Charcot-Marie-Tooth Disease (Facts about Charcot-marie-tooth disease and Filing for Disability, sounds very difficult to deal with on a day to day basis. Your condition is one of the most common of inherited neurological disorders; if fact, it affects 1 in 2500 people in the United States.

While Social Security does not have a specific listing for every medical condition, both physical and mental conditions are grouped by body system in the SSA list of disabling medical conditions.

Social Security disability determinations are based upon residual functional ability (what you are able to do in spite of the limitations imposed upon you by your disability condition) rather than specific impairments. That said, your condition is evaluated largely on the basis of neurological limitations and Social Security evaluates Charcot-Marie-Tooth under the criteria listed for neurological impairments.

I do not know your age but younger individuals (under 55) have a harder time being approved for disability.

You stated that you filed for disability two times, but did you appeal your disability claim denial? If you are not approved at the initial disability claim level, you need to use the Social Security disability appeal process to get your disability claim before an administrative law judge. That is your best chance of being approved; however if you never appeal your disability claim denial, you will never get there.

For more information, see the article titled: How does the Social Security Disability Appeal Process work?.

I hope this information helps you with your next disability claim.

Return to:  Social Security Disability Resource Center, or read answers to Questions

Related pages:

Filing for Social Security Disability or SSI with Multiple Sclerosis MS
Why Is It Hard to be Found Disabled for Social Security Disability or SSI for Seizures?
Do You Automatically Get Approved For Disability If You Had A Stroke?
Facts about Mini Strokes and Filing for Disability
Multiple Sclerosis (MS), Social Security Disability, and Applying for Benefits
Seizure Disorder, Social Security Disability, and Applying for Benefits
Why is Charcot-marie-tooth not on the Social Security Disability list of impairments?
Charcot-marie-tooth disease and Filing for Disability
Social Security Disability SSI and Traumatic Brain Injury (TBI)
Dystonia and Filing for Disability
Dysautonomia and Filing for Disability
Grand Mal Seizures and Filing for Disability
Narcolepsy, Social Security Disability, and Applying for Benefits
Epilepsy and Filing for Disability
Hydrocephalus and Filing for Disability
Memory Loss and Filing for Disability
Facts about Stroke and Filing for Disability

Information on the following topics can be found here: Social Security Disability Questions and in these subsections:

Frequently asked questions about getting Denied for Disability Benefits | FAQ on Disability Claim Representation | Info about Social Security Disability Approvals and Being Approved | FAQ on Social Security Disability SSI decisions | The SSD SSI Decision Process and what gets taken into consideration | Disability hearings before Judges | Medical exams for disability claims | Applying for Disability in various states | Selecting and hiring Disability Lawyers | Applying for Disability in North Carolina | Recent articles and answers to questions about SSD and SSI

These pages provide answers to basic questions about pursuing disability benefits

What is qualifying for disability based on?
What do you Need to Prove to Qualify for Disability Benefits?
Social Security Disability Status - when should I call to check
How do you prove your disability case if you have a mental condition?
What are the SSI disability qualifications for Adults and Children?
How Likely are You to Win Your Disability Case?
What Can I Do to Improve My Chances of Winning Disability Benefits?
Working while getting Disability - Is it Possible?
What is Social Security Back Pay?
What is the maximum back pay you can get for Social Security disability?