Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Finding emotional support
Are you getting the support you need? If so, how did you find it and what would you recommend to others?
3MCC child
- By CRowan · New reply November 5, 2009
- 6 replies
- I am looking to connect with other 3MCC parents whose children have had a metabolic crisis. My daughter was hospitalized last winter ...
Living with Ollier's
- By Mummakaren · New reply November 1, 2009
- 6 replies
- My name is Karen and I have Ollier's disease. I am 36 years old now and have never had the chance to talk to any one else who has it as well. I started having surgeries when I was 10 years old and about ...
imotile cilia syndrome or pcd
- By Raina · New reply October 31, 2009
- 21 replies
- My 4yr old has this disease. He was born with no cilia. Is there anyone else out there like him. Please let me know. I feel like we are all alone ...
Caudal Regression Syndrome
- By galpal · New reply October 29, 2009
- 20 replies
- Is there anyone out there that has a child with this syndrome? My daughter is now 5 yrs old and continues to have uti's and bouts of constipation. Has anyone heard of any new treatments? I am looking ...
Hirschsprung's diseases. Anyone else out there?
- By brodiesMom · New reply October 28, 2009
- 18 replies
- Hello, My son is 1 month old. He was diagnosed with Hirschsprung's at the age of 3 weeks old. I would really like support from parents with children with Hirschsprung's, and people who have Hirschsprung's ...
Need information about situs inversus (situs ambiguous)
- By violetfantasy · New reply October 24, 2009
- 5 replies
- My son now 20 months was born with situs ambiguous. His heart is the only organ on the correct side and he also has multiple to massive spleens. He is doing great but his blood labs trouble me..and Dr,s ...
CPM - need support
- By shilay · Posted October 23, 2009
- 0 replies
- Hi Everyone, I am so glad to find this forum. My father was admitted in the hospital on 29/10/09 for low sodium (95) level and was in ICU for couple of days. As doctors corrected his sodium level rapidly ...
Newborn baby in NICU and my mom dying of pancreatic cancer
- By denisehenshaw · New reply October 23, 2009
- 4 replies
- I am a daughter and a mother. I just had a preemie who was suppose to be born on dec 9th instead he was born on sept 26th. My mom has had pancreatic cancer for a yr now.. my mom has started the "dying ...
Mastocytosis in public
- By Cocoapuff68 · New reply October 23, 2009
- 2 replies
- Here is a silly question? Have any of you out here been at a doctors office and out of the blue you start talking to everyone in the waiting room about what is going on with them ....then you end up on ...
MRI vs. CAT SCAN
- By Scarde · New reply October 20, 2009
- 5 replies
- I've been told that a CAT SCAN will show more than a MRI! I know of two different people whos MRI didn't show all their injuries, but once they had a CAT SCAN it showed Major Damage! Does anyone know ...
ollier disease
- By patient101 · New reply October 19, 2009
- 6 replies
- i'd like to know how many people have ollier disease. so plz reply and feel free to share your thoughts and stories advice and treatments if you have any ...
langer's mesomelic dwarfism
- By las03 · New reply October 19, 2009
- 2 replies
- I am 44 and was just recently diagnosed with this. Although I have always known I had the madelungs deformity I never knew about the rest of me until recently. Would like to know if anyone else has this ...
Familial Idiopathic Basal Ganglia Calcification
- By jschott · New reply October 18, 2009
- 9 replies
- My father was just informed he has Fahr's disease. I began researching Fahr's disease and didn't find much--that's because it's really called Familial Idiopathic Basal Ganglia Calcification (FIBGC). Through ...
Bad Symptoms
- By rooann · New reply October 15, 2009
- 13 replies
- I have Cerebral Vasculitis, diagnosed in July this year, was getting on ok ish....my poor dog died at the vets yesterday, he was only 6 years old so unexpected, and this has really upset me,not only with ...
Cerebral Vasculitis
- By rooann · New reply October 13, 2009
- 40 replies
- Hi all I would really love to hear from anyone who has this, i was diagnosed in july 2009 and also had 3 strokes and would love to talk to someone about all this, as i need to others who understand as ...
periodic paraylis due to low potassium
- By Grace4 · New reply October 12, 2009
- 15 replies
- Any one else with this rare disease need to discuss how it affects work and independence? Also, do you know a Docter that knows any thing about it other than a neurogolist ...
von hippel lindau
- By tammy14221 · Posted October 8, 2009
- 0 replies
- I thank God for my sister and that she understands how i feel, I am just sorry she has to share in the same disease. She has been my insperation for many years, after our father passed away she and I ...
Unpredictable Seasonal Cycles With Mastocytosis
- By Poetessa · New reply October 8, 2009
- 9 replies
- Dear Gang, I just thought I would share what's been happening and see if anyone else has noticed anything similar. Being that this is my second year since diagnosis I am seeing obvious cycles with this ...
Mastocytosis and hair and eye color/Nationality
- By Poetessa · New reply October 8, 2009
- 27 replies
- I had a question for all those who suffer from Mastocytosis. I was recently told at NIH that all of the patients they have treated have had light hair and light eyes and of either German, Austrian or ...
CMTC/immunity
- By Questioningmom · New reply October 6, 2009
- 8 replies
- My daughter has CMTC and over the last few months has had multiple colds and ear infections. I did not know is there was any relation to this and her CMTC? I am sure they are not related but wanted to ...
