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My disease has no treatment
How do you cope and what suggestions might you offer to others in the same situation?
Natural Killer Cell Deficiency
- By Tamyra · New reply 4:53 am
- 1 reply
- I haven't been able to find another Adult that has Natural Killer Cell Deficiency. I was hoping someone would find me ...
central pontine myelinolysis
- By bitsofglass · New reply yesterday at 11:18 pm
- 151 replies
- I don't have this disease, but my 88 year old father is currently being tested for this. He was driving and his mind was sharp until April 13 when he was hospitalized for low sodium. When he came home ...
Menkes disease
- By menkesdisorder · New reply July 2, 2009
- 16 replies
- My son has Menkes disease. It is a rare genetic disorder. Does anyone here have any advice? I can't get any copper supplements here for my son. I need some information on what is the progression of the ...
RRP
- By Papilloma · New reply June 29, 2009
- 9 replies
- My sons has Recurrent Respitory Papilloma (virus on the vocal cords). He has been treated with Cidofovir every 6 weeks for the last three years with good results. Now the doses they must give him have ...
stiff person syndrome
- By docmaus · New reply June 29, 2009
- 15 replies
- By docmaus Posted today at 4:51 am · 0 replies Shared with the public Edit · Delete 0 RecommendationsRecommendPrintReport postIt is like having multiple sclerosis, parkinsons, and tetness. most of all ...
L2Hydroxy Glutaric Aciduria
- By RuthCarty · New reply June 27, 2009
- 10 replies
- My son is 26 and diagnosed with this neuro degenerative rare condition. Been in touch with Organic Acidemia assoc, also another mother with a younger child . Is there anybody out there that can give us ...
erythroblastosis fetalis / fetal hydrops
- By rosebud050298 · New reply June 26, 2009
- 20 replies
- I wanted to know it anyone is familiar with fetal hydrops pr hydrops fetalis. if anyone knows anything about this please let me know ...
Cystic Hygroma research in Norfolk VA
- By thevogels · Posted June 23, 2009
- 0 replies
- My son is almost 5. When I was 30 weeks pregnant with him, I had hypertension, so I getting ultrasounds very week. One week, they found a spot on the picture. No one knew what it was. We did research ...
17 year old daughter with Tietze's syndrome....HELP!!!
- By sheila_r · New reply June 23, 2009
- 24 replies
- Hello, I am new to this group... But my problem is with my 17 year old daughter who was originally diagnosed with costochondritis...but has had nothing but severe, chronic PAIN!!-(which they call: Tietze's ...
Henoch-Schonlein purpura (HSP)
- By nativef0x · New reply June 22, 2009
- 25 replies
- My 16 yr. old son was diagnosed a few months ago with HSP Henoch- Schonlein purpura. His 1st symptom was a reddish purple dotted rash from his thighs down to his ankles. The rash went away after about ...
Gerstmann Straussler scheincker
- By shasha_kitty · New reply June 21, 2009
- 4 replies
- HI there , I am really loss for words right now I have recently lost my mother to this Rare Disease. I have seen my grandfather get sick and pass away and now my mother and now my aunt is coming down ...
galloway mowat syndrome (brain+kidney+dev. delay)
- By cristyandlaura · New reply June 16, 2009
- 2 replies
- Anyone out there with similar complications ...
Tarlov cyst causing bladder problems
- By Maggie2300 · New reply June 14, 2009
- 33 replies
- Hi I am new to the group and wondered if anyone has had problems with bladder infections that turn out to be not an infection, as I keep getting these and my doctor has no idea what to do about it. I ...
Systemic Mastocytosis
- By jr7449 · New reply June 12, 2009
- 19 replies
- I was diagnosed with systemic mastocytosis about 6 months ago. This was after years of seeing doctors for my skin, which has been worsening with red/brown blotches that swell into hives when having an ...
Chondrocalcinosis CPPD
- By 1irishman · New reply May 19, 2009
- 2 replies
- Does anyone have this desease? Looking to find anyone interested in having a support group. How do you deal with the constant pain? Need someone to talk to who knows what it is like ...
Stargardt's Disease
- By TS · New reply May 18, 2009
- 1 reply
- My 9 year old son has recently been diagnosed with Stargardts Disease. After being told for 2 years that his perceived vision loss was psychological and attention seeking, we sought another opinion and ...
FibroMuscular Dysplasia
- By HubbyFMD · New reply May 17, 2009
- 10 replies
- My wife has FMD of the carotid artery and they tell us nothing can be done except narcotics.She also has lupus. We have tried all known remedies, 30 to 40 different drugs. Rolling headaches during the ...
Cayler Syndrome
- By heatherlynn1978 · Posted May 12, 2009
- 0 replies
- My six year old daughter was diganosed with Cayler Syndrome (Assymentric Crying Facies Syndrome) last May. I am just looking for other people that have the same syndrome to try to find more out about ...
4q deletions
- By msmithgst · New reply May 12, 2009
- 1 reply
- My son was born with this, they were just now able to diagnose him after 8 long mths. Does anyone know anything about this all i keep getting is this is rare. I'm tired of hearing that ...
MMD type 2
- By buzz1 · New reply May 10, 2009
- 2 replies
- My husband was first diagnosed with Parkinson's Disease, then later re-diagnosed with myotonic muscular dystrophy type 2 (more rare than type 1). Is anyone out there living with MMD 2 ?? I need someone ...
