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Welcome to Inspire!
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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?
Tarlov Disease--Third Surgery
- By Leabell · New reply 10:59 am
- 11 replies
- I am just curious if anyone out there has had more than 2 surgeries and if so what does your doctor say about them? I am about to have my third surgery to remove my cyst. It has been three years since ...
I have Eosinophilic Fasciitis
- By barbear · New reply 9:40 am
- 5 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 ...
Diploid Triploid Mosaic Syndrome, or Mosaic Triploidy
- By thejae · New reply 1:49 am
- 7 replies
- In the last few weeks, I've begun searching for moms and dads of children who have been diagnosed with Diploid Triploid Mosaic Syndrome, or Mosaic Triploidy. Right now, there are 17 in the world, that ...
Social Security Disability Process
- By tmichaelroche · New reply yesterday at 3:54 pm
- 1 reply
- I have begun the process of applying for SSD/SSI after my 4th Lumbar surgery ruined my back forever! I know what I am in for as far as the denials and paperwork and hearings etc.... I'm just look for ...
ANYONE OUT THERE?
- By shell3 · New reply yesterday at 11:29 am
- 18 replies
- does anyone out there have MOSAIC TRIPLOIDYsyndrome or care for someone with it? man this is rough... we are just going through a tough time that's all. i am a recent single mother of 3 and a half yr ...
SPS and Spastic Bowel?
- By Tinman · New reply yesterday at 10:15 am
- 13 replies
- Hello to all. This is specifically for those with Stiff Person's Syndrome but I am open to anyone's comments or suggestions. I have had SPS for 15 years as well as several other conditions. In the last ...
Adrenalectomy
- By jetter · New reply November 16, 2009
- 65 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 ...
30 years of Mediterranean Familail Fever
- By shelleyFMF · New reply November 16, 2009
- 2 replies
- Hello, I'm searching for others with this gentic disorder, It hit me at age 17 and it has been hell...I know others have this and would love to hear from you, Please contact me. Perhaps, we can help each ...
My son has Ollier's Disease
- By summerfun · New reply November 14, 2009
- 24 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 ...
Neonatal Graves disease
- By Valarie · New reply November 13, 2009
- 15 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 ...
recently diagnosed - looking for advice/help/support
- By louanne · New reply November 13, 2009
- 7 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 ...
tarlov cyst patients
- By debi4661 · New reply November 12, 2009
- 12 replies
- I would appreciate anyone going through a Tarlov Cyst operation to respond. I am scheduled on March 5th, 2009 with Dr. Feingenbaum ...
Hyperaldosteronism help
- By flowerspy · New reply November 12, 2009
- 7 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 ...
Trigeminal NEUROPATHY
- By twowesties · New reply November 12, 2009
- 62 replies
- I have trigeminal neuropathy (not neuralgia) which has totally changed my life. Until my dr. put me on Cymbalta, the burning pain in my upper back teeth was intolerable. The only thing which helped was ...
Conn's syndrome (hyperaldosteronism)
- By jacque · New reply November 7, 2009
- 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 November 6, 2009
- 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 ...
Mastocytosis and H1N1 vaccine
- By Cocoapuff68 · New reply November 6, 2009
- 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 ...
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 ...
