Happy Rare Disease Day!

Happy Rare Disease Day! Please wear jeans today to raise awareness.

Because I can’t. I cannot fit in any of my jeans at the moment, thanks to prednisone. Even if I could fit, it’s unclear if my skin would tolerate it. Yes, I am now “allergic” to many of my clothes.

On my first post-diagnosis Rare Disease Day, this is what it means to me to be one of the rarities:

I am a guinea pig. It is scary, isolating, and frustrating.rdd-logo

I am a research participant in pioneer studies – that are underfunded, primarily with philanthropy.

I don’t have adequate medical care. It’s typical to wait three to six months to see a doctor who understands my disease. And money always is a factor.

I carry emergency protocol with me at all times, because most ERs are unfamiliar with my disease and how to treat the life-threatening reactions it causes.

I am one of the lucky ones. I have a diagnosis. I am fortunate to have ping-ponged my way to a world-renowned specialist after decades of suffering. My diagnosis unlocked years of validation.

Today is hard and tomorrow will be hard. Everyday, I try to adjust to this purgatory, as I wait for better understanding of the disease and treatments.

However, I have hope that someday it will get a little easier. In the meantime, I am thankful for the support I receive at home and through the rare disease community.

2 thoughts on “Happy Rare Disease Day!

  1. I found this post via The Mighty.
    I’m really grateful that you shared your experience.
    I’m currently in the process of testing for MCAS, but I seem to check every box. It’s been a very rocky few months for me, the crowning glory of the past few years. Hearing from someone else is… validating, and it also helps me appreciate what I have even as I let myself be upset about what I can do.
    I hope your health improves and that you are always able to access the help you need. Good luck with a better, brighter future!

  2. Jeans…hmmm… didn’t happen in my world.
    I also celebrated yesterday on steriods…decadron for me. After having a migraine for a week(I have had migraines for 20+ yrs)…this Northern MN weather has not been kind to my head and then having my regular doctor decided to not treat me with protocol recommended by neurologist (who is 2 1/2 hrs away). Long story…but ended up getting wrong steriod prescribed.. the wrong med and I’m in trouble quick (benedryl and Prednisone are the worst triggers)… yesterday I got correct med…

    My local clinic cringes everytime I come in now.

    I’m so relieved to know I have MCAS…but there are moments…I am sick of being brave…not talking about…being polite…saying I feel good…

    I am grateful for the MCAS community…who understands…

    Thank you for sharing out loud what I think steriod sister!!!

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