Hi im new my name is Rachel.Ive been sick going on 3 years.It took the doctors many hospital stays,many years of poking and test.Before i was diagnosed with my rare disease.First of all there are less than 250 people world wide with this disease.Since 1887.I am the only person with it as far as my doctor knows on this hemesphere.I was told my disease is something that is only read in text books but never actually seen.Something that doctors have confrences about.His words not mine,so im writing this in hopes to find someones else that can relate to me.(Barraquer simons syndrome)My symptoms are chronic pain and swelling in my arms belly.my arms are so swollen that i dont have a wrist my belly is so swollen i look pregnant.im unable to stand,walk for long periods of time the pain gets so bad i need to sit or lay down.The doctors have me on 2 very strong pain medication.before i was put on this pain meds i was unable to get out of bed.Ive been told there is no cure.But i wont die from it.Im writing this in hopes to find out if there is anyone out there with my disease or any information that might help me.There is not much about it on the internet.Thank You.:dizzy:
Barraquer Simons Syndrome
- Thread starter gleigh_ec
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