My Disease

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Hi everyone,

Im 15 years old and from Australia.

I was diagnosed with blue rubber nevus syndrome from birth. My mum Kate (on the Facebook group) also has the condition as it is genetic.

I have multipul lesions around 30 and they range in size. They are all on my skin and thankfully not in my GI tract. However they swell up in great amounts of pain and cause blood clots that i have clexaine for from time to time.

I have had unsuccessful sclerotherapy and am now on sirolimus. I was effected by the antibiotics and was sick but now i know that it was the anti biotics and there are little side effects of sirolimus.

I am so happy to see others who have the condition as there are only like 200 of us and i am greatful for this site and to meet some people. Hope i can talk to some people especially if they are my age! :)


Thanks :) Ella