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daughter with POTS in south Fl

fltraveler
  • By fltraveler · New reply 11:38 am
  • Journal · 14 replies
  • we have a wonderful dr. out of state but need one locally to do follow-up...live near boca..does anyone know of one ...

Yeah!!! -- a little good news.....

dizzybee
  • By dizzybee · New reply 11:36 am
  • Journal · 10 replies
  • I finally got an appt with a geneticist on 1/13. This is just a meeting to see if I need genetic testing, but at least it's a start ...

Brain Lesions

BWR
  • By BWR · New reply 9:34 am
  • Journal · 1 reply
  • Hi everyone, My daughter started experiencing severe headaches about two years ago. We took her for CT's and MRI's which indicated she had some large masses of something on her brain. Doctors ruled out ...

Fahr's Disease

Macbeth
  • By Macbeth · New reply 9:17 am
  • Journal · 7 replies
  • I have been recently diagnosed with Fahr's (2 weeks) ago. I'm from Canada. Not too much is known about it. I'm really upset about the whole thing. If I could talk to anyone with the disease and see if ...

Amyloidosis Support Groups Inc.

Muriel
  • By Muriel · Posted 9:10 am
  • Journal · 0 replies
  • One more meeting this year. Our wonderful Dallas meeting in December. That's where it all started back in 2004. March 13th and La Donna and Maurice and Jim and so many others. We've lost so many and of ...

NIH to find a diagnose

Ragna
  • By Ragna · New reply 8:03 am
  • Journal · 5 replies
  • hi everyone,have anyone here who had a child that has been diagnosed after going to see NIH program,or does someone have a story for my how this goes over there!my doughter is getting worse and i need ...

HEREDITARY SPHEROCYTOSIS

csmp
  • By csmp · New reply 1:55 am
  • Discussion in Tips for caregivers · 15 replies
  • Does anyone know of any new research or treatment for HEREDITARY SPHEROCYTOSIS? My husband, our two children, and now our grandchild has this blood disorder ...

Help! Undiagnosed and Scared

undiagnosedandscared
  • By undiagnosedandscared · New reply yesterday at 10:44 pm
  • Discussion in Getting a diagnosis · 21 replies
  • HI I LIVE IN TEXAS. HERE IS MY STORY. My name is Jolene Rodriguez. Sometime in November, One day I went out with my boyfriend, my sister and her boyfriend. At night we went back to my sisters' house ...

Brown-Vialetto-Van Laere

BVVL
  • By BVVL · Posted yesterday at 2:40 pm
  • Discussion in Getting a diagnosis · 0 replies
  • This syndrome is rare, and I am trying to find other families with it. From what I've been told by the best docs in the country is that most BVVL cases go either undiagnosed or misdiagnosed. Symptoms ...

Glycogen Storage Disease V, McArdles Disease

JudyC
  • By JudyC · New reply yesterday at 12:44 pm
  • Discussion in Finding emotional support · 8 replies
  • I am having a hard time finding someone to corresponde with who has McArdles Disease. If there is anyone out there, please contact me ...

go

rgg
  • By rgg · Posted yesterday at 11:55 am
  • Journal · 0 replies
  • If your question is should you take your daughter to the NIH, absolutely! my son's doctor discouraged me for years, I knew what his illness was. I took him, the treatment you and your child receives is ...

What do I miss about life before my injury?

tammysci
  • By tammysci · New reply yesterday at 11:05 am
  • Journal · 9 replies
  • In the last couple of months people have asked me what I miss about my life before my injury. The answer is everything! How could I not miss things, it changed everything about how I thought my future ...

New feature: video!

Brian
  • By Brian · New reply yesterday at 10:36 am
  • Journal · 19 replies
  • I am pleased to announce that we have updated Inspire to support video. You can now share a video of yourself, videos that you find inspirational or informative, and more. I've included one of myself ...

Trigeminal NEUROPATHY

twowesties
  • By twowesties · New reply yesterday at 10:32 am
  • Discussion in Finding emotional support · 7 replies
  • I have trigeminal neuropathy (not neuralgia) which has totally changed my life. Until my dr. put me on Cymbalta, the burning pain in my upper back teeth was intolerable. The only thing which helped was ...

Isaac's syndrome

Lynn2
  • By Lynn2 · New reply yesterday at 8:41 am
  • Discussion in Getting a diagnosis · 497 replies
  • Does anyone have Isaac's syndrome or have a relative or friend who does? Also, if you are just knowledgeable about this disease... Thanks, Lynn ...

Trying to win the war on pain

tammysci
  • By tammysci · New reply yesterday at 8:02 am
  • Journal · 1 reply
  • Over the past 15 years I have struggled with pain and it can be very frustrating. When I wake up, the first 15 minutes of my day are the worst. I even bought a new mattress this year to try to help my ...

One year ago today...

junimead
  • By junimead · New reply yesterday at 4:00 am
  • Journal · 11 replies
  • I was sitting at this very computer looking up some silly thing or another when I started to feel faint and get the then ever increasing chest pains. A painfully long trip to the emergency room via ambulance ...

Information Needed - Chromosome 6 Deletion

ericwife4life
  • By ericwife4life · New reply yesterday at 12:36 am
  • Discussion in Getting a diagnosis · 4 replies
  • Our son is 13 days old and we have been told that he has a Chromosome 6 deletion. He has other medical issues as well, but the doctor's are not sure if they are related or not. If anyone has ANY information ...

Conn's syndrome (hyperaldosteronism)

jacque
  • By jacque · New reply yesterday at 12:16 am
  • Discussion in Finding emotional support · 15 replies
  • I would like to know someone else's story about their experience with Conn's syndrome. What were their symptoms before they were finally dignosed, and what is their treatment (medication or surgery ...

Senior Loken Syndrome

erinsrainbow
  • By erinsrainbow · New reply November 19, 2008
  • Discussion in Getting a diagnosis · 38 replies
  • Does anyone have a child with Senior Loken Syndrome? If so, I would like to hear from you. How was your child diagnosed ...

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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.