← Return to Living with Rare Disease and Chronic Pain: What's your story?

Discussion

Living with Rare Disease and Chronic Pain: What's your story?

Chronic Pain | Last Active: Sep 2, 2021 | Replies (43)
Comment receiving replies
@kimcvi

Hi Renee- My name is Kim and I have Myotonia Congenita, had it my whole life and never got diagnosed until 4 years ago when I fell at work. My PCP got me in the Mayo and that is where I was diagnosed. I always thought it was just me.

Jump to this post

Replies to "Hi Renee- My name is Kim and I have Myotonia Congenita, had it my whole life..."
Faithwalker007 (Renee) | @faithwalker007 | Feb 14, 2021

I am so glad you finally got an answer! I’m sorry it took so long. It seems the way it usually goes though.

VIEW AND REPLY
Faithwalker007 (Renee) | @faithwalker007 | Feb 15, 2021

Absolutely not! You are part of an entire family! You may be one of a few with your disease but not with a rare disease. Many share in your plight if no cure, little to no treatments and no available specialists to understand what or how to care for you.
RDLA is where to gain or advocate if you need a mission.

VIEW AND REPLY