Rare Disease Day 2016

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.

This post appeared on The Mighty on Rare Disease Day. 

One thought on “Rare Disease Day 2016

  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!

    Like

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