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Finding emotional support
Are you getting the support you need? If so, how did you find it and what would you recommend to others?
Conn's syndrome (hyperaldosteronism)
- By jacque · New reply 12:34 pm
- 97 replies
- I would like to know someone else's story about their experience with Conn's syndrome. What were their symptoms before they were finally dignosed, and what is their treatment (medication or surgery ...
Lupus Anticoagulant some help & an intro
- By utopianaurora · Posted yesterday at 2:41 pm
- 0 replies
- *if you are looking for cost effective solutions scroll to the bottom* Hi, i am Amber. I am 23 years old, married and a college graduate in psychology. I am back in school for social work for my second ...
Adrenalectomy
- By jetter · New reply yesterday at 11:26 am
- 58 replies
- I am considering an adrenalectomy for Conn's Syndrome. I'd like to know of experiences having an adrenalectomy and of those some time after the surgery ...
Mastocytosis and H1N1 vaccine
- By Cocoapuff68 · New reply yesterday at 8:43 am
- 2 replies
- Well as is goes I went this morning with my husband to get the H1N1 vaccine. I got my shot at 10 am this morning and it is now 2:30 pm ...so far I am crossing my fingers for no reaction. I just want to ...
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 ...
recently diagnosed - looking for advice/help/support
- By louanne · New reply November 5, 2009
- 2 replies
- Hi, I'm recently diagosed with cerebral vasculitis after suffering a couple of TIA's and other neurological issues. Initially started on steriods and immuno suppressants which seemed to work for a couple ...
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 ...
My son has Ollier's Disease
- By summerfun · New reply October 30, 2009
- 22 replies
- Hi, I would like to share my story. My son Brayden is 9 yrs. old and we just recently discovered he has Ollier's disease. He has it in his right arm and is showing deformity and we believe he also has ...
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 ...
I have Eosinophilic Fasciitis
- By barbear · Posted October 24, 2009
- 0 replies
- I wasa diagnosed with Eosiniphilic Fasciitis, a rare auto immune disease, in Oct. of 2008. I've tried several other sites attempting to find others with this, but have had no luck. It would just be so ...
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 ...
TRAPS and N1H1
- By SixLittleFeet · New reply October 19, 2009
- 10 replies
- Does having TRAPS out you in the *at risk* category for complications of N1H1 ...
