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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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12648020 tn?1426465932
Hi, Please help? I live in Mexico. Retired American. I was in a motorcycle accident 8 years ago that fractured my femur. (Compound fracture) A total of 8 operations in an attempt to save my leg because of the infection in the bone failed...
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ive been having constant aching in my legs from my knees down to my ankles it wakes me up most nights and can continue if im sat down for a while
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Hi i came across a topic about hs and i want to ask.i had a single bump in my armpit when i was 14yo..it never pop it just disappear on its own..but i noticed i developed a single sinus tract.now im in  mid 30's bump has never re occu...
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Is this a disease or syndrome? Are you born with it?
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I am waking almost every night with leg pains.I have tried anti inflammatory meds, hot baths,heating pads.Relief for short periods, but aching almost every night .So difficult to get rest.So exhausted the next day.Is there anything I cou...
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Avatar universal
I have a client who presents with the following: normal CBC/diff. Serum iron 51, unsaturated IBC 410-high, calculated total IBC 461-high, calculated % sats 11-low. Client does not present with fatigue. something does not compute. any t...
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I have recently been diagnosed with a rare medical condition called POTS by my cardiologist, but he wants me to see a specialist as he does not feel comfortable treating me and medicating me. Up here in canada it is about 8-12 months bef...
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I am a 48 year old woman and approximately a year ago, I stated having leg weakness and excruciating calf muscle and overall leg pain. Now I can barely walk; tip toe on right leg because of muscle atrophy; all over leg, bottom of foot, u...
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For past two weeks,i am suffering from severe pain from cramps in the calf of my right leg and sometimes the pain spread to heel region also.My GP suggested that i may suffer from dehydration and recommended me to drink water and increas...
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Hi my name is Jenny, i have bumps thats been on my skin for years now on my vaginal area.. It looks like its under the skin so they wont go away... Its so many of them, they sometimes get big then back small again, then i get active ones...
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Hi, my name is jenny and im currently crying and itching. Ive been breaking out in what looks like nasty swirly whiplike rashes, but the thing is.. It appears everywhere and anywhere i scratch.. I went to the e.r and of course they did n...
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I have been running for over 25 years; I ran in a 5K last Saturday and at the 2 mile marker, both knees blew out. Today is Thursday and I still cannot walk much, the pain is extreme. Doctor is trying to reduce inflammation with steroid...
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have these bumps on my lips for 6 days and I don't know it is. Can some one please tell me what these bumps are?
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I have these bumps on my lips for 6 days and I don't know it is. Can some one please tell me what these bumps are?
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Has anyone else on here been diagnosed with PG?
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I am 21 years old and have no set diagnosis, but a variety of symptoms that have lasted for years that don't add up or make sense. I have recently been sort of diagnosed clinically with Behcets because of skin lesions of my feet, my legs...
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Hi everybody. I was hoping somebody could give some tips about a condition that has slowly grown worse over the past two or so years since I started working full-time. I'll try to keep it short: 27 years old, male, Caucasian, South Af...
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I would like to contact anyone who is living with Hereditary Spherocytosis and still has their gallbladder and spleen. This is the case for myself and i would like to know how anyone else is managing.
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In December 17th of 2013 my little sister was admitted into the hospital for symptoms of what appeared to be stroke like symptoms. Weakness on her left hand side. She weighed 120lbs and had lost some movement in her left hand and her lef...
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11937255 tn?1422251357
About three years ago I started getting short of breath when walking, a slight cough, and almost fainting. My primary ran some tests and the echo came back stating my pulmonary hypertension levels were at 40. I ended up in the hospital a...
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