| i need help with a rare disease?

i need help with a rare disease?

lhayes238 asked:


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.

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Comments

6 Responses to “i need help with a rare disease?”

  1. belladona_ph on June 19th, 2009 11:31 pm

    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.

  2. Stretch on June 23rd, 2009 4:54 am

    try calling the cleveland clinic,and see what they say.or look it up on line to get the number, good luck to you..

  3. minx64 on June 23rd, 2009 8:34 am

    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

  4. melissa8886 on June 26th, 2009 4:19 am

    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.

  5. shin on July 3rd, 2009 11:27 am

    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.

  6. chILD Mom on July 5th, 2009 11:49 am

    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.