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How my disease has changed my life
Share your story with other community members.
Diabetes Insipidus
- By MsLauren86 · New reply October 23, 2009
- 43 replies
- Sometimes referred to as "The Other Diabetes," Diabetes Insipidus (DI) is a rare endocrine condition characterized by excessive thirst and urine volume. DI can result in one of two forms: nephrogenic ...
CMTC
- By kittycat71263 · New reply October 22, 2009
- 15 replies
- Hi My Son also has Cmtc.It is mainly on his left leg. But does have a small amount on other leg, scrotum one tiny place one back and on his eye lid! I am also trying to educate my self. My son was born ...
information on Isaac's Syndrome
- By Theresa3 · New reply October 21, 2009
- 7 replies
- Hi everyone, I am a student in Massage therapy school and we had an assignment for class. It was to find a muscle disease and write about it and determine what manipulations to use on this person. First ...
systemic Mastocytosis
- By slu · New reply October 19, 2009
- 3 replies
- My husband has been diganoised with this disease 6 yrs ago. The Dr. really didn't know how to even treat it. Finally after many changes of Dr.'s we went to the Moffit cancer center. The Dr. we got was ...
Diseases that noone talks/knows about
- By MCADMOM · New reply October 18, 2009
- 9 replies
- My son has Medium Chain Acyl CoA Dehydrogenase Deficiency (MCAD) and noone knows what I'm talking about. My son's condition is life threating and noone can help me because this condition is hidin. Things ...
SAPHO syndrome
- By walterscsr · New reply October 10, 2009
- 6 replies
- My son was just diagnosed with SAPHO syndrome. I've got a lot of questions, and I would like to connect with others who have had a similar diagnosis. Thanks ...
Symptoms: Tarlov cyst(s)
- By oneilpcb · New reply October 9, 2009
- 30 replies
- I am a 56 year old very frustrated female. I am a mother of 3, including a son, who is a physician in residency who says Tarlov cysts are asymptomatic. When I read about other sufferers from Tarlov cysts ...
klinefelters snydrome
- By kies · New reply October 8, 2009
- 6 replies
- who has klinefelters syndrome ?????and are you willing to talk about it ...
Mastocytosis changed everything
- By Cocoapuff68 · New reply October 3, 2009
- 5 replies
- I spend most of my time at appointments but, when I am not at the doctor's offices I sit here in front of this world of technology. I read and read, and still all I look for are related to histamine and ...
Exposure to animals or ticks in SPS Patients
- By DrJim · New reply October 1, 2009
- 7 replies
- I'm participating in s study looking for exposure to uncommon organisms in people who have a high exposure to domestic animals and/or ticks. There is a preliminary study showing the presence of some uncommon ...
Mastocytosis / MCAD
- By Cocoapuff68 · New reply September 30, 2009
- 8 replies
- Ok so I am stuck in this panic, can't get up and have whatever life I got, Syndrome! I know that I can get up and do even small things but I seem to be in this spot where all I want is my truck and my ...
Self Massage and Pressure Points
- By SickOfBeingSick · New reply September 27, 2009
- 9 replies
- I have been doing some self-massage and it helps. Gently massaging my face gets rid of some of the fluid that builds up when the lymph glands swell up and my sinusitis gets worse. Scrubbing my feet with ...
Pain
- By Jannie · New reply September 26, 2009
- 1 reply
- I stop climbing trees at age 48 now I will soon be 55 and this summer I will make my way back up a tree and come back down. Sure I hurt like XXX but I refuse to sit on the pot and take the junk the medical ...
Two triploidy pregnancies
- By Samnz · New reply September 24, 2009
- 5 replies
- Hi. I have just experienced my second triploidy pregnancy. Last year I had a partial molar pregnancy, and I have just had my triploidy daughter, stillborn at 22 weeks. Immediately before the lat pregnancy ...
Wanted - People for Chronic Illness Inter-Body Exchange Program
- By SickOfBeingSick · New reply September 22, 2009
- 21 replies
- The Inter-Body Exchange Program You - Have wanted to be able to "lie around all day" like me. You - Are envious of people with chronic diseases who don't have to work anymore. You - Wish you could get ...
Fabrazyme shortage for Fabry disease
- By Jerry_at_NFDF · Posted September 22, 2009
- 0 replies
- Tonight, there is a second Town Hall with Genzyme, the NFDF, FSIG, and the Fabry community about the shortage of Fabrazyme for treatment of Fabry disease. To participate, please call in on Wednesday ...
Freedomillenium
- By ilogiczz · New reply September 21, 2009
- 1 reply
- My desasae vchange my life totality.I see the world from a new point of vision.I see that not all your friends or collegues are with true reality your suoport wen you have need from encourage or athers ...
Husband with mastocytosis now other rare disease
- By sll · Posted September 19, 2009
- 0 replies
- Hi, I'm new to this site and would appreciate hearing from others with mastocytosis. My husband was disgnosed with cutaneous mastocytosis about 4 years ago but started showing symptoms shortly after he ...
Insipidus Diabetes coupled with Acromegaly
- By Betsey · New reply September 14, 2009
- 6 replies
- I am just wondering if anyone else has these two conditions. To my knowledge, I am the only patient in the area with these two conditions coupled. I would like to discuss your experience with DDAVP. Thank ...
I was never this good looking!
- By Tamyra · New reply September 12, 2009
- 13 replies
- Since I have been feeling not so well or worse, everyone who sees me doesn't forget to tell me, "Well You look good". I am being told that so often I think I went from a 7 or 8 to a 10. Just a smile for ...
