neuromuscular disease

Join the Conversation on
neuromuscular disease
206 people
0 stories
42 posts
Explore Our Newsletters
What's New in neuromuscular disease
See full photo

If you are living with a late-onset rare disease, what advice do you have for others navigating their daily life?

From family planning and relationships, to employment and retirement, living with late-onset rare disease can affect every single touchpoint in a person’s life (much more than others even realize).

But there’s strength in community, so we'd love for you to pay it forward. What’s a piece of advice you can share about your day-to-day experiences with navigating rare disease? What’s helped? What hasn’t?

✏️ P.S. We’re creating a story with one of our partners, Catalyst, to raise awareness around late-onset rare disease. Your answer may be used in an upcoming editorial story on The Mighty.

#RareDisease #LambertEatonMyasthenicSyndrome #MyastheniaGravis #CheckInWithMe #Spoonie #MentalHealth #LungCancer #SmallCellLungCancer #MuscularDystrophy #IntravenousImmunoglobulin #NeuromuscularDisease

12 reactions 6 comments

I am having a small pity party at the moment. It was such a struggle to get up my stairs just now because my legs are stiff. It hit me that my disease only gets worse over time and there is no cure. It is possible I will be in a wheelchair by the time I hit my 60s. Please don't get me wrong, I am grateful that what I have is not fatal. I am also grateful that it is a disease that progresses slowly. Normally I don't really think about it, I go about my day. It is what it is. Tomorrow I will wake up and keep going. But for right now? I just want to feel sorry for myself.

See full photo

How has the US Social Security Disability Approval Process Caused You More Harm?

We are now going on 5 years of fighting for it since I first applied for disability. I got an awful judge at the appeal after 3. 5 years of waiting who denied me again by using my treatment plans against me and making ageist, xenophobic, and uncalled for judgements about me while simultaneously saying she gives no weight to the literally millions of pages of medical records documenting my disability. My lawyer and I are furious. I know I'm not alone here. For me it has been 5 years without an income, no way to pay for housing or other basic needs. 5 years of added stress deteriorating my health. Comment with how long you've been waiting and fighting for this followed by an example of an effect of not having the coverage you need and what it has done to you or how it has made you feel.

Use the formula:
"X years of/without _____

We need to make it known the added harm this government is doing to us. Nearly 9,000 people die a year waiting for social security disability approvals. by saying "X years of/without ______"

#Disability #SocialSecurity #Ssdi #SSDInightmare #ChronicIllness #AutoimmuneDiseases #Fibromyalgia #BipolarDepression #Depression #Anxiety #CPTSD #PTSD #ChronicPain #NeuromuscularDisease #MentalHealth


Behind #MyCondition

Every day
I fear the things you take for granted:
Walking. Running. Jumping. Motion.
Some days
just wearing shoes hurts.
Some days
I feel strong and capable.
Most days
I hide how I feel.

#CharcotMarieToothDisease #CMT #RareDiseases #Neuropathy #NeuromuscularDisease