Rare Diseases Community
About This 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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selmaS22 hours
1
By nanasandy2
does Midrodrine cause weight gain? Have POTS Gained 5 lbs since on Midrodrine and 0.1 Fludrocortisone for 3 mont...
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By auntie_923
Any ideas of why after 90 loud weight loss, my back pain increased. Scoliosis had been stable for 10 years @ 65-70° ...
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Dr Santos Jul 07, 2010
2
By msneedhelp Blank
Please help me.. I have started feeling like there is something crawling under my skin.. I first felt it on my arms...
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lyn1235Jul 17
johnnie199164Sep 29, 2013
itsme156Jan 18, 2013
22yroldfemaleMar 12, 2011
reughrMar 09, 2011
8
By foreverinfaith60 Blank
I have Liddle Syndrome,and it is a very rare kidney disease. Very few Doctors know about it. It is passed through fam...
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Rose_ENov 27, 2008
Mar6811Nov 18, 2008
3
By Rose_E Blank
I really need your help.The symptoms described below began in Feb 08. As yet, there has been no conclusive diagnosis ...
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Camile33469Apr 19, 2013
4
By Camile33469 Blank
About a year and a half ago I took a hormone called hcg sublingually for weight loss purposes. After wards I began to...
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oldoldnavyNov 14, 2008
oldoldnavyNov 14, 2008
UkonNov 13, 2008
4
By oldoldnavy Blank
I recently (7/28) had a defib unit installed. Seven weeks later, I contracted an infection under the unit. I was put...
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By CMT1A
Is there anyone that has this disease on this site?
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selmaSJul 11
1
By disasterfullbeauty
So I have been diagnosed with chiari malformation but currently have no insurance and have not seen a doctor in 2+ ye...
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KATSBACKJul 09
michelle7676Nov 23, 2008
shay423Nov 23, 2008
michelle7676Nov 22, 2008
4
By shay423 Blank
I keep having these spells like my brain is flipping upside down, Can someone help me? It only lasts a minute and the...
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By shwetaisit
Hi, My mother legs pain a lot only in night when she goes to bed. It is such intense that she cannot sleep. Also we ...
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By SallyLovesJack Blank
On November 3rd, I realized that my left tonsil hurt when I swallowed. I'd had a little drainage over the weekend fro...
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nsilkApr 01
nsilkApr 01
nsilkApr 01
66
By Jhewels Blank
I have a extremily rare orphan disease called Dercum's Disease. Is there any doctor on this site familiar with this d...
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By SassySandyHarbolt
Has anyone ever heard of this before. My muscles are wasting away. I have lost around 40 plus pounds in the last year...
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By Ben_Marksberry
Hi everyone I am a teen currently and some pretty weird things have happened to me. What happened to me was that one ...
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By leahcdoyal
Needing help interpreting my labs my gr% is 40.2 Ly% is 45.8 all other cbc areas normal. Should I be worried?
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By Dustine97
Hello Lately i have been having a very weird, kind of filthy and maybe metallic-like taste in my mouth. I tried br...
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By Beccasgoingbatty
Hi, The night before one of our outdoor cats showed up with a baby bat. I rescued it and it appeared uninjured but...
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allmymarblesApr 28, 2011
3
By allmymarbles Blank
I know someone who returned home after almost six year in Iraq (as a civilian) with perplexing symptoms of toxicity. ...
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By Brittanyxxx
Hi all :) Just wondering if any of you gave CAH?
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selmaS
Allentown, PA