Support group for rare immune disorder.

Discussion in 'General Health & Wellness' started by mlbbarry, Jun 11, 2009.

  1. mlbbarry

    mlbbarry New Member

    About one year ago i was diagnosed with Idiopathic Granulomatous Hepatitis. This is a rare immune disease where your immune system attacks your otherwise healthy liver, causing elevated liver enzymes enlarged liver and spleen, and symptoms include, fever, fatigue, body aches and overall ill feeling. It has been difficult dealing with this and i have searched the internet looking for a support group with no luck. My rheumatologist has seen 3 out of 1000 patients with this illness. There are plenty of support groups for hepatitis, most are virus related and don't deal with immune disorders. Any help you may have would be greatly appreciated. Monica
  2. TwoCatDoctors

    TwoCatDoctors New Member

    Here are a few suggestions. See if your rheumatologist knows of any online supports groups that are not coming up in searches. The other option is to go onto one of the boards with many medical ailments and create a section for your ailment. Knowing that it is a rare disorder, you may not get anyone to respond, but it can be a place for you to post as much information as you have about your ailment so that as others search and find you, they will find you have been a trail blazer in getting a support board started AND putting good information on that support board. A good board that has a lot of medical ailments is MDJunction.com
  3. mlbbarry

    mlbbarry New Member

    i appreciate your input, a great deal, I have often thought of starting an online support group, but i am not to gifted with message boards, chats and etc... I don't even know if i am replying correctly. I will think about it more. Thank you again.

    Monica
  4. Sacajawea2

    Sacajawea2 Member

    Hi Monica,
    I am sorry to hear you deal with such a rare disease and have had trouble finding support. Have you ventured over to the Fibromyalgia message board (top right corner where it says "select a board")? If you ask about it there you may find someone else with your same disorder as many have a variety of health issues, some quite rare. I've seen all sorts of things mentioned that are indeed rare.

    There is way more activity there and if you put your disease in the title of your thread and like I said, you might get some on here that have the same illness or at least some information (or possibly questions).

    Regardless of what you have, you are welcome...you will be able to identify w/ many here who also deal with the symptoms of fibromyalgia and CFS, of which many overlap or mimic one another.

    I have heard of that and have a friend who's cousin has it but in her case they believe it's due to her sarcoidosis-- another immune disorder.

    I also have a rare genetic disease (but do have FM/CFS too) that has little in the way of supprt groups...there are a few but they scare me and are usually very empty and slow-- I joined two last year and promptly left. Since what I have is so rare, there can't help but be little activity. I haven't even looked in one in over a year since I find this place so welcoming and friendly, and helpful. Also, a year ago here I posted a question about my own other disease and found two other people w/ the same thing...I was thrilled to learn that I wasn't totally alone although I wouldn't wish this on anyone.

    Please check out some more of what prohealth has to offer and welcome to the site!!

    SJ