Journals

Shunt

walter_comer
  • By walter_comer · Yesterday at 9:52 pm
  • 0 replies
  • I finally have an appt to discuss my doc's reccomendation of a shunt. It's on the 10th. Hope we can get it done before the yr's end. That way it's covered 100 ...

another ER visit

shan789
  • By shan789 · Yesterday at 3:52 pm
  • 3 replies
  • Jake has been sick for over a month. He was seen at the Er last Monday and we found out that he had an unusal bowel infection in his cecostomy site. They started antibiotics, flagyl and k-flex, and said ...

Eosinophilic Fasciitis

Uconn
  • By Uconn · September 5, 2008
  • 0 replies
  • Does anyone know of a Doctor who has treated a patient with this rare tissue disorder: Eosinophilic Fasciitis ...

Just to let you know

brighamsmom
  • By brighamsmom · September 4, 2008
  • 0 replies
  • I am trying to simplify things so instead of trying to journal here I am doing it on my blog that I just started. If you are interested in getting to know my wonderful family please go to "Goodmorningsister.blogspot.com ...

Joy

martzj
  • By martzj · September 4, 2008
  • 7 replies
  • I take profound wisdom wherever I find it. "Choose serenity over security" "Let nothing so disturb us, so fill us with sorrow or discouragement, as to make us fortit the joy. Joy is not simply a matter ...

( ECCL) also known as The Fishmen Syndrome

shellymoon
  • By shellymoon · September 3, 2008
  • 4 replies
  • Brain, Face, Eye, Limbs, Teeth,Jaw, and Stomach these are the things in which I have pain but as fare as my family knows this rare disease only cause Brain Injury Facial and Eye Disfigurement as for the ...

UPDATE.....URGENT...NEED INFO ON 6YR OLD WITH PANCREAS PROBLEM

KathyG
  • By KathyG · September 3, 2008
  • 9 replies
  • Today I had to take my 6 yr old grandson to the emergency dept. He has been sick for 2 days. In my earlier post I explained that he has a pancreas problem and is taking enzymes. About 5 weeks ago the ...

Please let me no about the VHL HandBook soon.

Louise45
  • By Louise45 · September 1, 2008
  • 3 replies
  • Really need theme. I still dind't get the free VHL hand book.I did ask for 3 are 4 off theme but i still dind't get theme it's been quite a will now.I hope i get theme soon we have new Doctors now .And ...

a bit more this is a bit long so only if u have time

pita
  • By pita · August 29, 2008
  • 5 replies
  • I have been a Fireman for 15 years. I have had a lawn care business on the side for the past 4 years; I have an active life style both physically and mentally. This letter has been composed in hopes to ...

its just me

pita
  • By pita · August 29, 2008
  • 0 replies
  • www.inspire.com/pita 35 years old, Male, Married Dallas, Georgia fireaxesta10@yahoo.com Joined August 25, 2008 I've worked for Cherokee County Fire Department since 1992. I'm currently a sargent and Chaplin ...

Is he ever going to well?

shan789
  • By shan789 · August 28, 2008
  • 3 replies
  • Well Jake had his c-tube replaced with a Mic-key on Tuesday. He's having blood draining from his cecostomy site, the more active he is the more drainage. Then he woke up this morning throwing up. I know ...

Trisomy 9 Mosaic Syndrome

maggismom
  • By maggismom · August 27, 2008
  • 0 replies
  • My 3 year old daughter, Maggi, was diagnosed with Trisomy 9 Mosaic Syndrome when she was 13 months old. We are hoping to meet other families like ours through NORD and INSPIRE. Please contact me personally ...

Privacy and control

Brian
  • By Brian · August 27, 2008
  • 48 replies
  • At Inspire, we think about privacy all the time. Virtually every web site has a privacy policy; you can read ours here: http://www.inspire.com/about/privacy/. But simply following the letter of a privacy ...

Update on Tyler

snugglebearsmom
  • By snugglebearsmom · August 25, 2008
  • 14 replies
  • Today was a very emotional day, we decided that we are not going to have him go through the transplant. It was the hardest decision I have ever had to make in my life however I feel that it was for the ...

'' IN PAIN''

shellymoon
  • By shellymoon · August 25, 2008
  • 19 replies
  • On Aug 25, 2008, at 3:54 PM, Shelly wrote: I am having a lot of seizures so many that my mommy is taking me back to Houston next week to see my neurolgist, I also am having migraines, was just diognosed ...

Amyloidosis Support Groups Inc. - Hurricane

Muriel
  • By Muriel · August 25, 2008
  • 0 replies
  • We arrived in just that right window at the Tampa airport Friday night. The meeting went off without a hitch and we were able to have dinner with Linda M and family in Dover on Saturday night and dinner ...

Still needing help for 6 yr old with pancreas problem!!!!

KathyG
  • By KathyG · August 24, 2008
  • 5 replies
  • My grandson goes to Wake Forest University Baptist Medical Center / Brenner's Children's Hospital in North Carolina. He will be 7 in October. So far the only thing we DO KNOW is that he has Asthma and ...

needing to find answers desparately

meesha1
  • By meesha1 · August 24, 2008
  • 5 replies
  • I have a 17 year old son who is miserable. He has been struggling since he was 7 years old. His first symptom was not being able to catch his breath, it has snowballed from there. He has shortness of ...

Worried mom

shan789
  • By shan789 · August 23, 2008
  • 5 replies
  • Jake started 7th grade oon Thursday. He was so scared and worried that his friends would find out about his c-tube. I tried talking to him about it but he will not talk to me. He is a great kid and is ...

Its been a while since I last posted!

CanadaNuse
  • By CanadaNuse · August 21, 2008
  • 0 replies
  • There has been alot going on, since our last post, and honestly I don't know where to start. We had over TEN doctor visits and still not closer to anything. But we keep on getting more clinical DX for ...

Search

Find information and discussion about health topics in 234,295 posts by members like yourself. Learn more...

Join

Join safe, secure groups sponsored by trusted organizations that care about your health. Learn more...

Connect

Connect with 62,235 members and make friends who share your interests, learn about conditions and treatments, find support and more. Learn more...

You

Send your feedback to Inspire

About

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.