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Isaac's syndrome

Lynn2
  • By Lynn2 · New reply 6:45 am
  • Discussion in Getting a diagnosis · 284 replies
  • Does anyone have Isaac's syndrome or have a relative or friend who does? Also, if you are just knowledgeable about this disease... Thanks, Lynn ...

5 month old with Hirschsprung's

LogansGrammy
  • By LogansGrammy · New reply 1:01 am
  • Discussion in Finding emotional support · 6 replies
  • My 5 1/2 month old grandson was diagnosed with Hirschsprung's disease when he was about a month old. He weighs 12 lbs at this time and he is having watery stools, not diarrhea. His doctor has said we ...

Hoping to find someone who understands

Susan1955
  • By Susan1955 · New reply yesterday at 10:55 pm
  • Journal · 10 replies
  • I am 52 and was diagnosed last month with Addisons disease, high cholestrol and kidney disease (all at one time). Am having a lot of problems adjusting to the meds or maybe just the disease (I don't know ...

Ehlers-Danlos Syndrome (EDS)??

hukleberrie
  • By hukleberrie · New reply yesterday at 9:34 pm
  • Discussion in Getting a diagnosis · 11 replies
  • Hello, all. I have been having some health issues lately. I have had things all my life, but lately it's been a little out of control. I became very sick over a year ago and lost 50 lbs. At this time ...

Gene Defect

sharper
  • By sharper · New reply yesterday at 7:25 pm
  • Journal · 9 replies
  • I was born with a Gene mutation which causes fever, arthralgia,conjuntivitis, urticaria, depression, and on and on... This was passed through the paternal side of my family and I have two sisters who ...

moya moya and family support

suzQ
  • By suzQ · New reply yesterday at 10:01 am
  • Discussion in Financial issues · 6 replies
  • This is my first post: I am on a power search to help our (a community of over 500) friend Killagrrrl (Donna) who "went down" on New Years Even, in SanFRan (she is from NYC) - and...yeah - moya moya aneurism/brain/coma ...

Horrible Rib Area Pain in Back radiates to front??

hukleberrie
  • By hukleberrie · New reply yesterday at 6:14 am
  • Discussion in Getting a diagnosis · 110 replies
  • I don't know if I am in the right place... I feel really silly posting my problems with you all who seem to have such serious health issues.... I sure would love any insight on what any of you may make ...

Beals Syndrome (CCA) in a Marfan's patient?

Althea42
  • By Althea42 · Posted yesterday at 1:02 am
  • Discussion in Getting a diagnosis · 0 replies
  • Hello all, So, I'm one of those 'lucky' people who has known about my Marfan Syndrome since birth because it runs in my family and goes back several generations. I try to stay on top of what's happening ...

Familial Mediterranean Fever Disease

kristin26
  • By kristin26 · New reply August 18, 2008
  • Discussion in Getting a diagnosis · 7 replies
  • Is there any one that has this Disease? I Just found out i have it on june 17th and its very rare! I feel so alone. I hope i can find someone who has the same Disease so i understand what im going through ...

wrong diagnosis

juliej1960
  • By juliej1960 · New reply August 18, 2008
  • Journal · 5 replies
  • hi to all my husband ken was diagnosed last year as having hse, after another attack in july he has been diagnosed as never having hse and has got melas syndrome very rare and worse than hse, thanks to ...

trying to find

juliej1960
  • By juliej1960 · Posted August 18, 2008
  • Discussion in Finding emotional support · 0 replies
  • is there anyone else who has got melas or a member of their family has it my husband has just been diagnosed and i would like advice off others with this or their carers thamk you ...

Waiting for Diagnosis

wonderingapril
  • By wonderingapril · New reply August 18, 2008
  • Discussion in Getting a diagnosis · 1 reply
  • My neurologist thinks I might have CIDP. We have ruled out MS. We have tried to get a Nerve Study done twice now and I haven't been able to complete either one. Does anyone know if there is any other ...

Need another source of income

Zacolton
  • By Zacolton · New reply August 17, 2008
  • Journal · 15 replies
  • So I'm currently working at Blockbuster and the job is great but problem I only have enough energy to work at maximum 30 hours a week and when I head to university this winter I won't be able to juggle ...

Septo optic dysplasia

Lupe87
  • By Lupe87 · New reply August 17, 2008
  • Journal · 1 reply
  • My daughter was born with jaundice and she would throw up almost after all her feedings. At two months I took her to the emergency room because she was very weak and limp. The doctors diagnosed her with ...

Septo Optic Dysplasia

NickArcella
  • By NickArcella · Posted August 17, 2008
  • Discussion in My disease has no treatment · 0 replies
  • THIS CONDITION S CATEGORIZED UNDER "ORPHAN DISEASES AND DISORDERS" ... My daughter has this condition and i am trying to get neurologists and neurosurgeons advice and opinions. Obviously i have this open ...

Checking in with sad news!

caletham28
  • By caletham28 · New reply August 16, 2008
  • Journal · 3 replies
  • I found out yesterday that my health insurance has been denied to the Mayo clinic in AR. I wasn't devastated because I had a feeling that is was going to be denied where it took so long to hear. My case ...

still looking for a DX

larkspur3
  • By larkspur3 · New reply August 16, 2008
  • Discussion in Getting a diagnosis · 1 reply
  • Hi, Thought I would mention my symptoms to the experts, because for the last ten years I have not received a dx. I get Hives, but not regular hives angioedema hives, my eyes start first, then my face ...

Pitt Hopkins Syndrome

sueinholland
  • By sueinholland · New reply August 16, 2008
  • Discussion in Getting a diagnosis · 34 replies
  • Our 16 year old son has just been diagnosed with Pitt Hopkins Syndrome and we are trying to find other families with a child with this diagnosis. A blood test has only recently been developed so we are ...

mucha habermann

suzanne22452

Tarlov cysts

Tam
  • By Tam · New reply August 15, 2008
  • Discussion in Getting a diagnosis · 20 replies
  • I have had back pain, leg pain, and headaches. If I walk for more than 15 minutes I'm in pain, same with sitting. I wake up during the night 2 to 4 times because of the pain. This has been happening now ...

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The NORD Rare Disease Support Community connects patients, families, friends and caregivers for support and inspiration. The NORD Rare Disease Support Community is sponsored by the National Organization for Rare Disorders in partnership with Inspire.