The story of Vivian
First of all, i would like to apologise for my bad english. I am from Greece and i was born with McCune Albright syndrome but the doctors here had no idea about it. I was three year old when i started having the first problems with my heart and they took me to hospital. They did some blood exams and that was all. Two years later i noticed a blue spot on my left leg. It wasn’t hurting me nor i hit it somewhere. I woke up with it. They took me to hospital and they told me i was having Fibrous Dysplasia. I had a surgery and they cleaned the bone from the tumor. Still, they had no idea that McCune caused Dysplasia to my bones. I was suffering from the pain and a year later we found a better doctor who used Ilizarov to cut the bone, put the nails and grow a new one. I spend years in bed and i started to gain weight. I walked again when i was 13 year old. I was suffering all those years with racism. I grew up and continued gain weight even if i was eating like a normal thin girl. They took me to hospital when i was 16 where they say the cafe au lait spots on my skin and the blue tongue. They kept me a whole year in the hospital, doing blood exams and so many others. And there they told us about McCune Albright. I am taking pills since then for so many different problems that syndrome caused me. They haven’t find the cure and i dont believe they will ever find it. But us, people with rare syndromes we want to be respected and live like the normal people. All we want is a good health. No money. No nothing. Good health is first of everything. I even went on Greek tv but no doctor cared. I am paying a lot of money every month for my pills. I am taking 9 pills every day. I wish if there was a hospital to take me in and check my health, even help me with my weight. I wear glasses cause i can’t see well and i check my hearing every 6 months. There’s a lot of problems that MAS can cause. They told me that MAS can be deadly but i hope i wont die from it. I just want to change the world, make a better world where everyone will respect each other and people with rare diseases. I wish you all good luck. May God be by your side.