New discussions
- By emierzal · Posted yesterday at 11:20 pm
- In Getting a diagnosis · 0 replies
- Hay.. I'm from Indonesia..(sorry about my English) I have a son that has a very low Hb level (3.4) when he was born..And got a 3 times blood transfution in tree days. (40cc,25cc,25cc). The diagnose is ...
- By accessn12 · Posted November 27, 2008
- In Finding emotional support · 0 replies
- Hello, I'm just kind of wondering if anyone else out there has been diagnosed with RTH. I find it kind of hard sometimes not having someone else I can talk to about what it's like. It took me 48 years ...
- By KimberlyD0 · Posted November 25, 2008
- In Tips for caregivers · 15 replies
- My Daughter is 6.5 months old. When she was born her right leg and foot was covered in dark blue almost black vains. We were told she had a venus malformation and it would go away. When she was 2 months ...
- By Valarie · Posted November 24, 2008
- In Finding emotional support · 0 replies
- Hello all, I am trying to find anyone that has had a child with Neonatal graves disease that may need some support. Unlike most people that have children with this disease I am well versed in it. I have ...
- By hlu1055 · Posted November 23, 2008
- In Tips for caregivers · 0 replies
- dear friends--my 25 year old son has a rare genetic condition, ring chromosome 15. 1 of the manifestations of this condition for him has been chronic middle ear problems coupled with variable hearing ...
- By joshua · Posted November 22, 2008
- In How my disease has changed my life · 0 replies
- My disease has changed my life in many ways,I hate to say it but it was for the better before i was living like i had nothing to live for now i do its funny how that works isnt it ...
- By fannyfarfunkle · Posted November 21, 2008
- In Medicare, medicaid and medical insurance · 0 replies
- Has anyone ever successfully had medicaid pay for the genetic testing for ehlers-danlos type IV. I hear that usually it has to be paid by credit card in advance and that doctors don't have any luck getting ...
- By Syd_Mum · Posted November 21, 2008
- In Finding emotional support · 1 reply
- Hi, I was wondering if anyone else has been diagnosed with Primary congenital Ig G1 specific deficiency. My daughter and I were diagnosed with this about 18 months ago. We have had a really hard time ...
- By BVVL · Posted November 20, 2008
- In Getting a diagnosis · 0 replies
- This syndrome is rare, and I am trying to find other families with it. From what I've been told by the best docs in the country is that most BVVL cases go either undiagnosed or misdiagnosed. Symptoms ...
- By rgg · Posted November 18, 2008
- In Finding emotional support · 3 replies
- I live in Az. and care for a handicapped adult son who also has a genetic disorder as well as suffering from the results of a brain hemmorage as an infant. I want to organize parents who are at the mercy ...
- By USAFwife · Posted November 17, 2008
- In Getting a diagnosis · 6 replies
- I am 24 years old, and have been suffering for years now. I have been to gastrointestinal specialist, neurologist, to many general practitioners to count, and several ER's. Yes, I am overweight, 260pd ...
- By sissybangs · Posted November 17, 2008
- In Finding a doctor · 0 replies
- My 16 year old son was recently diagnosed with Steatocystoma Multiplex Suppurative. He has an atypical disease that is behaving atypically. Lucky us! The majority of his cysts have been in the perianal ...
- By flowerspy · Posted November 17, 2008
- In Finding emotional support · 0 replies
- Hi, I was diagnosed with an adrenal tumor/hyperaldosteronism back in May. I have learned a lot since then but still have many questions. One thing I know is that many drs, including endocrinologists ...
- By MichelleBelle · Posted November 16, 2008
- In My disease has no treatment · 5 replies
- For the last year and a half I have tried a few treatments for fibromyalgia (All of which have had horrible side effects). My mom met a woman at my brothers football practice who has fibromyalgia, and ...
- By tres · Posted November 15, 2008
- In Tips for caregivers · 2 replies
- Does anyone know of anyone having heart related issues with this skin disorder ...
- By veroamore · Posted November 15, 2008
- In Finding emotional support · 1 reply
- Hello. I was diagnosed with cyclical neutropenia 3 years ago with no family history of it. I am now 19 years old. I feel like this illness rules my life and that there is nothing I can do to change it ...
- By mishap · Posted November 14, 2008
- In Finding a doctor · 2 replies
- I got hurt at work and my symptoms got worse. Didn't know I even had this till my Dr. took a MRI after my fall. My comp case was going down the tubes because their doctor said he could find nothing to ...
- By ELEMSI · Posted November 11, 2008
- In Getting a diagnosis · 0 replies
- I am wondering if there is anyone else out there that thinks they may have Conn's but cannot get diagnosed. I have been not feeling well for over 4 years. I started with dizzy spells and having problems ...
- By Liljedahl · Posted November 10, 2008
- In Getting a diagnosis · 6 replies
- Chelsea is 12 years old. She had a caesarian birth 2 months early and was 3lbs 3oz. Chelsea is bright and intelligent but can still not speak properly as she lacks some motor control. She suffers severe ...
