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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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1611319 tn?1378621999
is this disease going to take my life in the next few years or am I headed for a lung transplant. Was diagnosed in July with this from T...
3 answers |
Avatar universal
They both have chronic CRP index of between 20 to 30. The only thing I have been able to find to help is lysozyme chloride but it has var...
20791473 tn?1507482488
Good morning, Since English is not my first tongue, if I made mistakes you don't understand the following descriptions, please ask. Thi...
Avatar universal
My brother was diagnosed with Polycythemia Vera last December. His diagnosis came after having a stroke at 49 years old. That led to his...
20686019 tn?1503691061
I don't know if this is a rare disease or not because I have no idea what it is. But whatever it is, outs left multiple doctors mystifie...
1 answer |
Avatar universal
I don't know if anyone can answer this but here goes....I was just diagnosed with Polycythemia Vera. This is a slow growing blood cancer....
10328616 tn?1409340361
Has Morgellons been labeled as real yet? I don't understand how the government can deny people from all walks of life, geographically sep...
2 answers |
Avatar universal
Periodically, my ears will begin to flush and burn. It then spreads to my face, neck, shoulders, elbows, knees and ankles. I literally fe...
11 answers | 6 comments |
Avatar universal
I'm 36 I went to doctor on June 8 2017 because I've been exhausted for a while now and low energy she said she hasn't done blood work on ...
Avatar universal
This may be a drastically long read, I'm sorry. I think in order to have a full understanding of my overall health you will need to know...
Avatar universal
I've been having left leg pain - only at night. The pain is dull, nagging pain throughout my entire leg that doesn't go away with a mass...
29 answers | 5 comments |
Avatar universal
I have Liddle Syndrome,and it is a very rare kidney disease. Very few Doctors know about it. It is passed through families and can be dea...
13 answers | 1 comment |
Avatar universal
29 year old male  5'11  147 lbs  My symptoms started in December. I had swollen neck lymph nodes, night sweats and chills. Doctor wa...
2 answers |
Avatar universal
Wherever I go within one minute I see a fly Or flies there. Even after a bath I can a tiny reddish fruitfly like fly past me. I am going...
2 answers |
Avatar universal
I am going to write a lot of information. A few months ago, I was having on and off stiffness in my right arm while I was at work. There ...
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I have muscle spasms, twitches, severe weakness in arms, legs, hands, feet, trouble swallowing, sinus and ear pain, with bladder pain, do...
2 answers | 1 comment |
Avatar universal
When I lay down my right calf will start burning and then it becomes a deep ache. And it is only in my right calf. Doctors have said they...
Avatar universal
Hello, I am a 32 year old male who was perfectly healthy and active as a child and adolescent. When I was 22 and Iin college I had t...
7 answers | 1 comment |
Avatar universal
I have had several instances where I have urinated a live worm. The first time, I thought it must have been in there prior. The second ...
6 answers |
Avatar universal
My daughter has had a sensitive stomach for as long as I can remember. She has always had a hard time keeping weight on. She is a profe...
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