Are you getting the support you need? If so, how did you find it and what would you recommend to others?
- By keeley03 · September 18, 2008
- 4 replies
- Hi, i just recently joined to this group but cannot find any recent entries or discussions about ectrodactyly. i would like to know if there is anyone that has this disease or has a family member with ...
- By maracay76 · August 20, 2008
- 6 replies
- Someone talk to me about this.. I really am at my wits end with these. I can do most things but I always end up with a lot of stiffness and most of all pain in my legs and lower back and lately my neck ...
- By mumoftwins · August 20, 2008
- 0 replies
- My daughter has been diagnosed with Megalencephaly Polymicrogyria Polydactyly syndrome. She is the 7th in the world to be diagnosed. There are 2 families in the UK with children who have the same syndrome ...
- By juliej1960 · August 18, 2008
- 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 ...
- By Rosina · August 14, 2008
- 0 replies
- I am mother of three daughters aged 12, 6 and 5 months. My eldest daughter was diagnosed with L2 Hydroxyglutaric Aciduria at aged 8 and then also found out that my 2nd daughter has the same condition ...
- By bagels · August 10, 2008
- 0 replies
- I thought I sent out a discussion explaining my health issues more exstensively and that it would be available for other to compare with their health experience, thereby helping them come to better understanding ...
- By litletony · August 8, 2008
- 1 reply
- We had MRI last week and I am still waiting for the result. I will probably make an appointment so I can sit with Dr. Graf and see what else we can do since the last three result that I had didn't really ...
- By snuggles · August 6, 2008
- 3 replies
- My unborn daughter was diagnosed as a diploid/triploid mosaicism baby at 20 weeks of my pregnancy but we lost her on April 28,2008 and wanted to keep learning about this condition and what the odds are ...
- By Ksue2 · August 1, 2008
- 2 replies
- Just wanted to see if there is anyone out there with this rare disease. Please contact me ...
- By sarahlea1717 · July 28, 2008
- 2 replies
- I was wondering how many people are near Milwaukee, WI and would be interested in getting together for a support group? It wouldn't be for any particular disease, but instead be general support for having ...
- By ShortCutie-VACTERL · July 25, 2008
- 1 reply
- I recently moved back from Florida to New York, and now I struggle. My biggest struggle is in finding a job. I ran out of savings months ago and now am living off of my parents. Fun fun fun. My plans ...
- By RT · July 21, 2008
- 2 replies
- It appears not everyone who has Stiff-Person Syndrome is affected in the same way and some medications work for some and not others. Some have tested positive for GAD 65 Antibodies and others have not ...
- By RT · July 20, 2008
- 1 reply
- My wife was recently diagnosed with Auto antibodies to a 128-kd Synaptic Protein. According to The New England Journal of Medicine there are only Three Women with the Stiff-Man Syndrome and Breast Cancer ...
- By rzrbckgrl · July 11, 2008
- 2 replies
- My daughter Abigail passed away in May. She was 2 years old and I found her diagnosis just a week before she passed. She had Syndromic Diarrhea, also known as Tricho-Hepato-Enteric Syndrome or Phenotypic ...
- By ericwife4life · July 9, 2008
- 10 replies
- My son Gage was born on March 8, 2008. We knew he had several issues before he was born. We were currently then living in Hawaii and therefore we were moved to San Diego to deliver him. He was born with ...
- By beansy · July 8, 2008
- 5 replies
- I have searched for a long time, and have never found another person who has had an arterial venous malformation and bleed of brain, brain surgery, or the resulting homonymous hemianopsia, a vision disability ...
- By wagd66 · July 4, 2008
- 0 replies
- Looking for anyone that has Omenn's in their family. Our son has had two bone marrow transplants ...
- By Leriene · June 25, 2008
- 2 replies
- I was Diagnosed in 2006 with this illness and have had a tough time. I was sent home from hospital on several occasions because it was 'a stomach bug'. I continued being sick and going into what is called ...
- By NicholeB · June 18, 2008
- 4 replies
- We are getting ready to bring home a baby who has been diagnosed with Syndromic Diarrhea in Early Infancy. Does anyone else here know anything about this rare disease? We need any help anyone can give ...
- By LogansGrammy · June 13, 2008
- 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 ...
