My life with Madelung Deformity

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I was about 13 years old when I was diagnosed with Madelung Deformity. I was told by my doctor that there was nothing to do, but that they are doing some research about the disease. As I didn’t have that much pain to affect my everyday life, I went home with another appointment some years later. As years went by I started to feel more and more pain in both my wrists. My doctor specialized in Madelung offered me about five or six years ago a surgery he had tried on some other patients as well. I have now had one surgery in each wrist. Today, I feel pain on a daily basis, but hopefully it won’t be nessecary with more surgeries in many years. I just have to live with the pain and adjust my life to what I am capable of.