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eosinophilic
- By shan789 · New reply 10:21 pm
- Journal · 25 replies
- Jake is currently being treated for this and I want to find out as much as possible about this disease. He is taking pulimcort slurry. 1 vial of pulimcort mixed with 5 packets of splenda ...
What is a Rare Disease?
- By foreverinbluejeans · New reply 10:08 pm
- Discussion in How my disease has changed my life · 5 replies
- In the United States of America, the Rare Disease Act of 2002 defines rare disease strictly according to prevalence, as "any disease or condition that affects less than 200,000 persons in the United States ...
petit mal seizures
- By songscat · New reply 10:00 pm
- Journal · 3 replies
- One if y=the components if my life is small seizures that cause me to fall and remain unconscious for up to several hours. I had onenlast Sunday and another this morning. Have just begun an Rx to control ...
"HYPOKALEMIA OR LOW POTASSIUM"
- By mandyblue · New reply 9:20 pm
- Journal · 18 replies
- I want to share this research information in "My Journal". This is a very long collection of articles, that explains in great detail, about Hypokalemia or Low Potassium. It is for anyone who needs help ...
Mastocytosis
- By Fabulous005 · New reply 8:40 pm
- Journal · 8 replies
- I have a question I'm going through some testing to see if I do indeed have any type of mastocytosis, but I started experiencing symptoms and those tan/brown spots a few years ago once I moved to this ...
Shortage of vitamine E
- By Peter1308 · Posted 5:58 pm
- Discussion in My disease has no treatment · 0 replies
- There is a little hope, cause they found a way to delay the progression..... But it's always too late ...
TRIGEMINAL NEUROPATHY
- By Gary1970 · Posted 3:34 pm
- Discussion in Getting a diagnosis · 0 replies
- I am currently 39 years of age and until just after my 37th birthday I was free from any type of nerve pain. In March 2007, I caught a viral infection which essentially after a week attacked my right ...
Again its' been a while since I last posted
- By CanadaNuse · Posted 1:48 pm
- Journal · 0 replies
- A lot has happened since we last posted. Current Up date from NIH isn't going to be clear cut and to the point. All it say's that my daughter Ashley case is more complex then they thought! Yesterday July ...
Team Spazz! (or I Have a Dream)
- By maux · Posted 1:23 pm
- Journal · 0 replies
- I have a dream: TEAM SPAZZ! Support for Stiff Man Syndrome. Inspired by Betty-Oops and our mutual affection for..... shopping carts! I can't help it, but I have a crazy idea. Let's start our own Stiff ...
Did you attend the conference? Why? or Why not?
- By joyceg98 · New reply 12:55 pm
- Journal · 4 replies
- Let's talk about the pros and cons of attending a patient conference. What are the benefits? or what kept you away? We would like to learn, so that we can serve you better. http://bit.ly/14wRzy The radio ...
Solo Walking - Out there - SPS friendly?
- By Betty-Oops · New reply 11:14 am
- Journal · 18 replies
- I posted yesterday about my wistful thinking about walking. Thinking is better if followed by postive action, so... I want to walk my new neighborhood, but SPS symptoms of agoraphopia, heightened startle ...
Heading to Maryland Sunday and Hare Krishna
- By FridayThe13th · New reply 10:40 am
- Journal · 2 replies
- It's almost that time. Time to go get this over with. One more day at work then the infamous "VHL Vacation" I just keep reminding myself..."It is what it is". I stopped the other day to think about it ...
Diagnosing
- By foreverinbluejeans · Posted 10:04 am
- Discussion in Getting a diagnosis · 0 replies
- What kind of discussions belong in the topic "Getting a Diagnosis"? People are coming to this website and listing their symptoms and then others are giving possible diagnosis and suggestions for tests ...
happy 4th of July
- By steviemac · New reply 9:38 am
- Journal · 1 reply
- I want everyone to be nice to others like, opening a door, or let another driver through....Just try to be a good person to all that you meet...Just say hi, or have a great nite...And make sure your animals ...
indolent systemic mastocytosis
- By marcia3 · New reply 7:10 am
- Journal · 5 replies
- I would like to communicate with someone who has indolent systemic mastocytosis. I would like to find someone who understands what I am going through. Thanks ...
hypospadias patient
- By dazy · New reply 5:27 am
- Discussion in Financial issues · 7 replies
- Hi i m 30yr old guys.i need help to did the surgery for hypospadias. i have insurence also but its a conginital desease so no insurence cover it and its a complex surgery so it cost around 2000US$. can ...
Natural Killer Cell Deficiency
- By Tamyra · New reply 4:53 am
- Discussion in My disease has no treatment · 1 reply
- I haven't been able to find another Adult that has Natural Killer Cell Deficiency. I was hoping someone would find me ...
Lifeboat Perspective
- By Betty-Oops · New reply 2:50 am
- Journal · 2 replies
- I have Stiff Person Syndrome, SPS. I have been in other forums where the focus is SPS only, helpful to understand the mechanics of the syndrome. All difficult diagnoses have their own individual recipe ...
central pontine myelinolysis
- By bitsofglass · New reply yesterday at 11:18 pm
- Discussion in My disease has no treatment · 151 replies
- I don't have this disease, but my 88 year old father is currently being tested for this. He was driving and his mind was sharp until April 13 when he was hospitalized for low sodium. When he came home ...
How I Found Out I had Crest Syndrome/Disease
- By CrestLady · Posted yesterday at 6:46 pm
- Journal · 0 replies
- After being misdiagnosed by one doctor as having rheumatoid arthritis, I found out fr. another rheumatologist that I didn't have RA. I have Crest, specifically three of the five symptoms. I was so glad ...
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The NORD Rare Disease Support Community connects patients, families, friends and caregivers for support and inspiration. The NORD Rare Disease Support Community is sponsored by the National Organization for Rare Disorders in partnership with Inspire.