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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?
Myofibrillar Myopathy Desminopathy?
- By Muroc · New reply July 20, 2009
- 1 reply
- Please forgive me - this is new to me and quite life changing and scary. Just been diagnosed with the above (quite a mouthful). My neurologist has only had 1 other patient with this genetic disease and ...
MMD type 2
- By buzz1 · New reply July 9, 2009
- 3 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 ...
Camptocormia or Bent Spine Syndrome
- By wilmag · Posted July 8, 2009
- 0 replies
- Does anyone have any research information if there is a relationship Pulmonary hypertension? Hodgins disease - radiation therapy and chemo therapy? Should I push myself or take it easy? Is there treatments ...
Myelin Repair--not just for MS sufferers
- By UrsaBear · New reply July 7, 2009
- 9 replies
- As a sufferer of Central Pontine Myelinolysis (CPM), I have always beleived there will be a cure for this devastating condition. It is also ironic that my sister has Multiple Sclerosis. Or is it? Either ...
FibroMuscular Dysplasia
- By HubbyFMD · New reply July 5, 2009
- 11 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 ...
Shortage of vitamine E
- By Peter1308 · Posted July 4, 2009
- 0 replies
- There is a little hope, cause they found a way to delay the progression..... But it's always too late ...
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 ...
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 ...
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 ...
galloway mowat syndrome (brain+kidney+dev. delay)
- By cristyandlaura · New reply June 16, 2009
- 2 replies
- Anyone out there with similar complications ...
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 ...
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 ...
Bannayan-Ruvalcaba-Riley Syndrome
- By Cteach · New reply April 30, 2009
- 1 reply
- My 9 year old son was recently diagnosed with Bannayan-Ruvalcaba-Riley Syndrome. He was 6 months old when he started to get fatty tumors (lipomas). Initially the docs said that if they were not malignant ...
is anyone currently being treated for sweet sydrome
- By onestress · Posted April 24, 2009
- 0 replies
- My mother has been diag. with acute febrile neutrophilic dermatosis (also refered to sweet sydrome) She is 59 yrs old. and has been treated for 5 yrs with M A N Y diff. meds. She has been off/on pretnazone(spelling ...
Using Proclamations to spread awareness and raise funds for research
- By aVEDSer · New reply April 2, 2009
- 4 replies
- Proclamation Whereas, Ehlers-Danlos Syndrome is a group of genetic disorders involving mutations in connective tissue characterized by looseness, instability, and dislocations of the joints, fragile and ...
Fibrolamellor Hepatocellular Carcinoma
- By angiesmom · Posted March 21, 2009
- 0 replies
- THis is the disease that we were told my daughter has in January of this year. There are no treatments and the doctors tried surgery to no avail. Anyone else dealing with this? Thanks Angie's mom ...
Parry Romberg Syndrome
- By NicholeBPRSadvocate · Posted March 16, 2009
- 0 replies
- If anyone has Parry Romberg Syndrome please feel free to contact me as I have PRS as well. I am advocating PRS awareness and researching PRS in general, I have been writing a book on PRS and all associated ...
Galloway-Mowat Synd. (kidney+brain+dev. delay)
- By cristyandlaura · Posted March 15, 2009
- 0 replies
- Looking for people who's condition might be similar to my five year old's. She has FSGS nephrotic syndrome (kidneys), optic nerve hypoplasia (eyes), cerebral volume loss (brain), and a global developmental ...
Can you fly with henoch schonlein purpura?
- By clarem · Posted March 10, 2009
- 0 replies
- My son has just been diagnosced with this. Thankfully, the only symptoms he's had so far are the spots/bruising and his feet & knees have been a little stiff. We are hoping to go on holiday soon. Can ...
