Ashley Kurpiel suffers from Fibrodysplasia Ossificans Progressiva (FOP), which affects just one out of every two million people. It causes muscles, tendons and ligaments to spontaneously turn into new bones and there is currently no cure.
Ms Kurpiel was misdiagnosed with cancer when she was just two-and-a-half and even had her arm amputated. But five months after the crucial operation the doctors said that the tumour they thought was a carcinoma was actually a sign of FOP.
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“I am growing a second skeleton in a sense, becoming a human statue physically. Many others living with this lose all mobility, head to toe, and their jaws have locked shut. At 25 I lost mobility in my right leg and had to learn to live life and how to move around.
I don’t know how much longer I will have movement in my body, so I want to experience as much as I can now. I’ve been blessed to meet so many truly amazing people, especially the Dalai Lama. I attend many events all year round and talk to other people who are suffering.I spend a lot of time on social media answering messages that families send me regarding FOP and I try to help as many people as possible. I look for the positive side of things – I’ve had my hardships and never know what the next day will bring, but I take each day as it comes.”
The condition arises from a mutation of the body’s repair mechanism. In many cases, even the slightest injuries can cause joints to become permanently frozen in place. Surgical removal of the extra bone growths causes the body to “repair” the affected area with even more bones.
The disease is incurable, and eventually results in death when the cartilage holding the ribs together also solidifies, making it impossible to breathe. Patients eventually suffocate or suffer a cardiac arrest as their bodies attempt to get enough oxygen.
My heart goes out any one living with any rear condition.
Nice post.. Really touching.
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