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Rare Diseases Community

This patient support community is for discussions relating to rare diseases and disorders. Some example include: Aarskog syndrome, Acoustic Neuroma, Angelman Syndrome, Behcet Syndrome, Bell’s Palsy, Canavan Disease, Carbon Baby Syndrome, Charcot Marie Tooth Disease, Chromosome Monosomy Disorders, Chromosome Trisomy Disorders, Devic's Disease, Dystonia, Ewing’s Sarcoma, Fragile X Syndrome, Immune Thrombocytopenia, Kawasaki Syndrome,Maple Syrup Urine Disease, Mastocytosis, McCune Albright syndrome, Pachygyria, Polycystic Kidney Disease, Prader-Willi Syndrome, Reiter’s Syndrome, Sickle cell anemia, Sturge-Weber syndrome, Trisomy Disorders, Usher Syndrome, Xanthinuria, Zollinger-Ellison syndrome.

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Avatar_universal
for over a week now, I have been suffering from random swelling. It started with the right side of my lower lip. over a 18 hour period the swelling "migrated" from right to left. When the left side of my lip was swollen, the swelling ...
RBK42 | Last comment
Avatar_universal
my husband has been treated for I T P [ideopathic thrombocytic purpura] 5 years back.an un known cause of lack of platelets.he has taken steroids [predesolone] as a part of treatment.at that time platelet count was dropped to 8000.but he...
arkshanthi1966 | Last comment
Avatar_universal
Hi I'm very worried about my 14 year old son he has stretch marks on his back he has grown a few Inshes in the last few months he has most of the signs for Marfan syndrome tall skinny crowded teeth he also has had heart murmur since he w...
PWC45 | Posted
Avatar_universal
From last 2 months I am suffering from digestion problem. My bowel is not getting cleaned up. Apart from this I am also suffering from extensive body heat, leg pain, redness in urine, redness and swelling of eyes. Kindly guide whether t...
Honeydanny | Posted
Avatar_universal
 I am a 16 year old male and have been having severe pain, aches, and morning stiffness in many joints. This started 2-3 years ago and I haven't had a day of relief since. My rheumatologist has already ruled out the possibly of an autoim...
StevenS2000 | Last answer
Avatar_universal
hi, I'm Agnes (from Poland) I had Psychogenic movement disorders (PMDs) and speechesdisorders since 2006. Now I'm 30 years old. I move on a wheelchair. In the house I can make only few steps because I don't feel the balance. I was in hos...
agnes86 | Posted
Avatar_universal
hi every one, Im currently reviewing one of my notes and I find it difficult to explain as to why does the urine specific gravity in SIADH still remains high despite having lots lots of water in the body (due to excessive release of ADH)?
jhek | Posted
1064552_tn?1322583358
Hi. I probably have mitochodrial disease (I'm in the last stages of diagnosis) so I'm researching it and I have some questions about it. I haven't tripped over some of the answers yet and was wondering if the community on here might hav...
Chrystalheart | Last answer
Avatar_universal
What treatment do you follow?
Avatar_universal
Hi everyone! I hope you all had a good holiday. I could use some advice regarding falling to the point where I get very bruised. It's not the same as the regular drop attacks. It has been over a year since my surgery. Has anyone els...
painintheneck81 | Posted
Avatar_universal
Hello i am a 19 year old male.. I've a serious problem. I had a accident 2 months back, not a major one, but just giving a brief history. So my problem is that i have itching in my body, like whole body but mostly on my head. It starts s...
AleeKhalid | Posted
Avatar_universal
Hello, For the past one year, I have lost my ability to sneeze completely. I get the sensation to sneeze but that goes away quickly and brings in discomfort. When I am unable to sneeze, I get heaviness in my chest and an distressi...
lahsiv2004 | Last answer
Avatar_universal
Please help me.. I have started feeling like there is something crawling under my skin.. I first felt it on my arms now my face around my lips and eyebrows. I have started pulling my eyebrows out and when I look at the tips I see a cl...
msneedhelp | Last comment
Avatar_universal
When sleeping on my left side, I'm awakened by severe pain and numbness on the entire left side of my body. The only thing that relieves the pain is turning to my right side, which is very difficult to do. This began several months ago...
fit4life12 | Posted
Avatar_universal
Hi Please I need some urgent help, when ever I am around people they start coughing, clearing their throats, rubbing their noses and wiping their faces. At first I thought suspect my self but decided to go to different places to get clue...
Serex | Last answer
Avatar_universal
My 15 year old son has had marks, which look like stretch marks, on his back for 6-8 months. He is tall and slim and has not gained or lost weight. I have read about Marfan Syndrome and he does have quite a few of those traits, however i...
lorih1220 | Last answer
Avatar_universal
what medication do they give people with chrons
JACKIEBO | Last answer
Avatar_universal
About 5 days ago I noticed a rash on the top of my feet and lower legs. They are as small as pin pricks, they don't itch or hurt. Well tonight I noticed they are now on the tops of my hands. I read it could be from a low platelet count. ...
sonjao | Posted
Avatar_universal
I really need your help.The symptoms described below began in Feb 08. As yet, there has been no conclusive diagnosis and the ailment is impacting every part of my personal and professional life. I have been to 50+MD's and the Mayo Clinic...
Rose_E | Last answer
Avatar_universal
I'm 14 years old I'm 5'8 and 134 I've been getting stretch marks I have them on my thigh,back,arm,and my knee idk what to do is it normal to get alot of stretch marks the ones on my back are the ones that kinda bothers me there not like ...
chris2244 | Last answer
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