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It's Time for My Rare Disease to Show Itself to the World


To my dear friend, McCune-Albright-Syndrome (MAS):

If doctors didn’t tell me that I have a rare friend living inside of me, I wouldn’t have noticed you for quite some time.

But you showed up. You stretched my body length when I was actually too small for it. You made me look older than I really am so that I looked a little displaced. You were so jealous that you did everything to be my only friend in life, because the way you changed me scared the rest away. You live inside of me and you are well disguised.

Nobody can see you.

Nobody can hear you.

But you played with parts of my skeleton and tissue, and that’s where the doctors can see you.

When I became a teenager, you showed up fully and scared the doctors with a loud “boo.” But they returned. They were curious. They tried to study you to help me, but you didn’t allow them to read your rules. You’re shy and you forced me to learn to love you. You made sure that you won’t go away. You love being with me.

The scars of all 16 of my surgeries will always remind me that you live inside of me. You managed to put me in a wheelchair for one year when I was 12 years old, but looked 16. Then you forced me to walk with crutches for over two more years. You challenge me to my mental maximum.

You made me so strong and so full of loving life that I received a gift from the universe the moment I asked for it: I got the chance to live a full year in the United States! And it was the best gift I ever received – filled with positive experience, very nice people, some struggles of course, and a lot of new experience and insights. I grabbed every little piece that came along to learn from it.

And you still stayed with me, fully disguised.

Although it was a tough life so far, there is one true gift you handed over to me.

It is a rare gift.

Many people dream of it and we all know that one has to pay the highest price for it:  you gave me 100 percent freedom.

I am free from any medical treatments, free from groups I deeply belong to, free from true friends (not really fair…), free of my own family or a partner (I am very angry about this), and free of financial security for a great survival. And that’s the downside of the coin.

With no true friend ever in my entire life, because I was instead an entertainer for others, I lack the relevant ability to trust strangers. Strangers I met abused my intellect and my friendly personality. They abused my kind offer to be a friend. I gave them so many tries that I had to give up on ever finding the right people. You did everything to keep me just for yourself.

And I can’t let go of you because you are with me – I can only tell you to go into my furthest corner and stay there. Don’t move anymore. Be quiet. You can stay if you be quiet. And you agreed. You figured out it’s time to go to sleep and to give back 90 percent’s worth of life quality to me.

But then the financial crisis approached. The environment changed outside and there’s no comfortable place for MAS survivors. We’re too rare to take care of in society. We’re free people. We’re not really involved in the habits and movements around us.

But we need a voice.

Others might finally have to look at you, and study your different faces and actions to include you and not keep you outside anymore. It’s time to talk about yourself.

Show us some signs! Be more visible and open.

Tell us where you come from, why you’re here, and what you’re up to.

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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