neuromuscular disease

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

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

Neuromuscular diseases are a large community of conditions, which I fall into. I'm grateful to have a community that shares in the joys and woes of my condition. Thank you for being here.

Also I'll be spamming lots of pics I make for rare disease awareness. Stay tuned!

#MuscularDystrophy #NeuromuscularDisease #RareDisease