Scleroderma Foundation, Greater Washington DC Chapter

Well this is a loaded question! When it comes to being chronically ill I have so many not to mention pet peeves in general. #😂
1. When people ask me why I don’t work and I tell them I’ve been on long term disability since 2006 and they give me that “your just a lazy leach sucking away at my tax dollars” look
2. When people tell me to change my diet and be more physically active. You know “try training for a marathon and stop eating cake”
3. “You don’t look sick”
4. When people in the medical field have no knowledge of Scleroderma
5. How it’s so hard to raise funds for research because it’s such an unknown disease. Who wants to donate to that, right?
Well those are my top five. What are some of yours?

I’m thinking of putting this on a T-shirt, 😂. Then I won’t have to keep explaining my pain to people. I can just point to my shirt! What do you do to help with your pain?

You are amazing!

What are some of your tricks for remembering to take your meds?

A day of remembrance, for those that lost their lives and for all of those that have their lives. #911

#🇺🇸
A study released by the Mayo Clinic in 2016 identified 63 confirmed and 34 probable cases of post 9/11 SAIDs (systemic autoimmune diseases) diagnosed between September 12, 2001, and September 11, 2014. The mean age of the patient diagnosis was 49.5 years (range, 28.4-69.4 years). That study includes the following diagnoses: Rheumatoid Arthritis (RA), spondyloarthritis and ankylosing spondylitis), systemic lupe erythematosus (SLE), inflammatory myositis, antiphospholipid syndrom, systemic sclerosis (scleroderma) granulomatosis with polyangiitis and Churg-Strauss syndrome. I find this very fascinating and heartbreaking and I just you might as well

On this I would like to dedicate this post to from and all of the new friends I made at this years National Patient Education Conference. This community is amazing. They have some of the strongest and most caring people ever put on earth.