A Letter to My Friend With a Genetic Disorder


I have a friend, an amazing friend, who lives with a rare genetic disorder.

I can remember first seeing him struggle, how he had friends by his side. We got to talking one day and realized we are opposites. His bones are strong, while mine are more fragile. My genetic disorder means the glue that holds the body together is faulty, or not all there. My body loves falling apart, joint dislocations everywhere, while his soft connective tissue slowly turns into bone. We joked that we should combine our bodies –that way, maybe that will fix us.

Our conversations are some of the best ones I have had. On another occasion we walked to our religion class together and just talked about our days. We talked about how I fear dentists due to the fact that the anesthesia does not work for me, and I feel everything the dentist does. I have months of someone drilling into my teeth to fill a cavity. This results in my having pain for months, but with my friend, it’s risky if his jaw gets stuck.

It’s comforting to know him, because I know in one way I’m not alone. I’m not alone in pain, sorrow, and disappointment of not being able to do something I really want to do. We don’t share genetic disorders, but we both do have a genetic disorder and can understand some things about each, other better than our peers can.

There is something I’d love to say to my friend, and for everyone out there with Fibrodysplasia Ossificans Progressiva. Please read this as if it’s written to you because I have a feeling you could all use something like this.

My friend,

You were sent on this road, before you could walk or talk. You may wonder what it’s like to be healthy, to not have chronic pain every second of every day, but the strength you possess is more valuable than any experience you may have in a healthy body. As a chronically ill young woman – who has seen both sides, who learned about her genetic disorder at 19 – I would like to say that you are amazing and so strong. A strength you gained from years of struggle.

I want you to know you are not disposable. Your condition may have a shortened life span, and maybe it scares you, but you will always be worthy of love and kindness from others. There is so much more about you than your illness, or the way you walk. There is a beautiful soul that cares about others, there is someone who knows pain and tries easing it in others.

You’re not alone. You are loved, and please believe me when I say there is someone out there who wants to love you, cherish you, care for you, and hold you, because she knows your friendship is priceless, your soul is beautiful, and your pain will not hold forever.

Please remember, you are loved and lovable just the way you are. It’s OK to let others in. You are amazing, smart, kind, loving, and you are worth getting to know and love. I, for one, am grateful to know you. Keep holding on, I believe there are amazing things yet in store for you.

Sincerely,
Your friend with a genetic disorder.

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