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Why I Advocate for People With Rare Diseases

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Gosh, I just can’t take this. I just can’t help but cry, and write. Advocacy is hard – rewarding, but hard on the soul.

I meet so many people online while doing advocacy for rare disease conditions. I help connect people with communities that support their conditions and doctors that treat them.

But sometimes we lose these amazing rare warriors to their battles. No matter how often you see it happen, it’s heartbreaking every time.

Someone failed them. That’s what it boils down to. Someone failed them.

Maybe not purposely, but, if the proper funding was available to perform research, and develop proper treatments, maybe we wouldn’t be losing so many beautiful people.

I can remember when I was still searching for a diagnosis… I can remember being sick all the time and nobody could tell me what was wrong for years. I felt lost, I felt ignored, I felt judged and most of all I felt alone.

And that led to fear. I had no idea someone could be going through what I was going through.

I thought doctors felt I was making it up.

When I was finally led to a support group on Facebook where others had the same condition I had, I read, and I read… and I wept, and I cried, like I had never cried before. A feeling of “they see me” just washed over me.

You know what I mean? When someone says “I see you,” like, all of you, and everything that you are and I except that and I love that in every way.

I hurt for so long, alone, unseen… And I swore when I found out what was wrong with me I would never let another person feel alone like I did.

This is why advocacy is so important to me! Advocacy of any rare condition or any individual or foundation that needs it.

Anyone can advocate, from anywhere, on any platform, on any scale. You can use your cell, share a message or a post. Write a note, tell somebody you hear them. Tell somebody “you see them.” Write a letter.

Let’s not let our fallen warriors go in vain – let’s share about them and their illness. We were all alone once.

Fight like a warrior!

In memory of Hayley G. S. No more pain.

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Photo via filitova on Getty Images

Originally published: December 9, 2017
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