i need help with a rare disease?

Question

i have solomon syndrome its a dermitological disease that can also affect your nervous system and cardiovascular, i need to find the name and number of a dr or company who might be able to answer some questions for me i live in california but anywhere in america is fine i cant seem to find anything ive checked tons of websites but i think somethings wrong with my head and it might be serious. thanks i will choose a best answer.

Answer 1

http://www.emedicine.com/DERM/topic732.htm


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i would star with firing off some letters to these people

Author: Robert A Schwartz, MD, MPH, Professor and Head of Dermatology, Professor of Medicine, Professor of Pediatrics, Professor of Pathology, Professor of Preventive Medicine and Community Health, UMDNJ-New Jersey Medical School
Coauthor(s): Sergiusz Jozwiak, MD, PhD, Head, Professor, Department of Child Neurology, The Children's Memorial Health Institute of Warsaw, Poland


Robert A Schwartz, MD, MPH, is a member of the following medical societies: Alpha Omega Alpha, American Academy of Dermatology, American College of Physicians, and Sigma Xi

Answer 2

The most logical thing, of course, would be to talk to the doctor who diagnosed you. In rare diseases, however, that often does not get you much information. I had never heard of Solomon Syndrome until reading your question, but I can relate to how alone you feel. My little girl has a rare lung disease, and trying to get information is not exactly easy. Sometimes I swear that if I hear one more doctor say, "I'm sorry, but I have nothing to compare her to," I am going to scream! One thing that might work is to contact whomever is writing the articles about the disease. In your case, what about the guy who wrote the emedicine article? Looking elsewhere on the net, I found some contact info for him (second link below). Maybe he can help point you in the right direction or at least tell you who to call. Best of luck to you.

Answer 3

I would try looking it up at the national institute of health website or try looking it up on the Center for Diseases Control website. You might be able to find a foundation or some thing that might be able to guide you towards experts in the field.

Answer 4

I am not sure of any websites. Try searching by the actual name:
Epidermal Nevus Syndrome (ENS). This might narrow down some of the sites.

Answer 5

check with some of the large teaching hospitals such as UCLA medical center,John Hopkins Hopsital they usually have pretty good dermatology departments....you may not find answers to specific questions on hospital websites...best thing is to call them and find out directly if they can deal with what you have

Answer 6

hey there !
I am not really aware of the disease but i certainly know the cure .that is by practicing Yoga , the ancient Indian physical & mental healing practice. You need to learn pranayam . and beleive you me 1000 kinds of such diseases are cured by yoga's help. all the best & tk care

Answer 7

go to a hospital!
try a big 1 such as emory for example! this can be seirous & affect the rest of your life! HOpe this helps!

Answer 8

It is better to consult your doctor who diagnosed you with that disease. Maybe he/she can refer you to other doctors if you want a second opinion. Consulting your doctor would answer all your fears and queries and needs. It is better to have a face to face consultation.

Answer 9

Have you tried asking your doctor for a site you can educate from? Go to google search and ask ...Good Luck!

Answer 10

go to your nearest free health clinic and they would be able to give you all the numbers you need. dont have a free health clinic? then just go to a health clinic of any kind and try it that way.