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bpd
- By denisehenshaw · New reply 3:28 pm
- Journal · 1 reply
- Just found out my child has BPD and I am scared. he is not due till dec 8th but i had him on sept 26th. he has never been on a vent until 2 days ago he got put on one for the first time. I dont know what ...
Cinderella Emmy
- By MelissaShuford · New reply 3:20 pm
- Journal · 6 replies
- Thanks for all your prayers!!!!! Emmy won 2010 Junior Miss Claremont!!!! She is so giddy and excited!!! Love to see her so happy ...
Thankful
- By dizzybee · New reply 2:38 pm
- Journal · 5 replies
- Just wanted to say that despite all the troubles in my life and all the ills in the world, I am still thankful. Thankful, that my husband has a job and we can pay our bills and put food on the table ...
Adrenalectomy
- By jetter · New reply 2:26 pm
- Discussion in Finding emotional support · 76 replies
- I am considering an adrenalectomy for Conn's Syndrome. I'd like to know of experiences having an adrenalectomy and of those some time after the surgery ...
RND
- By softballgirl · New reply 2:10 pm
- Discussion in Getting a diagnosis · 2 replies
- I just got diagnosed with rnd and I've had pain since I was 5 years old and now i have to wait to get into the institute has anyone been there? I'm nervous and I'd like to know what It's like there ...
Reflex Neurovascular Dystrophy Pain
- By momtobecka · New reply 1:54 pm
- Discussion in My child and school · 5 replies
- My 13 year old was just told she has RND and we do not have an appointment yet for treatment at TCI. Does anyone know what we can try for the pain in the meanwhile so she can get back to school ...
Meds that help Cramp Fasciculation Syndrome
- By jupiterjane · New reply 1:25 pm
- Discussion in How my disease has changed my life · 39 replies
- I have been dealing with Cramp Fasciculation Syndrome for several years now. I have been on countless medications and have had IVIG treatments and nothing seems to be working. Please, if you have this ...
Cramp Fasciculation Syndrome
- By Griff · New reply 12:53 pm
- Discussion in Getting a diagnosis · 90 replies
- For two years I have been having electric shocks in my arms and hands, muscle twitches all over, and excruciating stabbing pains in my thighs and calves. This week I was finally diagnosed with Cramp Fasciculation ...
Why does God hate me?
- By djmtard · New reply 11:46 am
- Journal · 47 replies
- Since I was very young my life has been a series of bad accidents and illnesses. It started when I was 15. I was in the state finals for barrel racing and came off my horse and broke my back. Then when ...
It can always be worse / inspirational quote
- By tmichaelroche · Posted 10:37 am
- Journal · 0 replies
- Quotes to Lift You Up When You’re Feeling Down Uplifting quotes for hard times As we strive to make it through difficult times, hearing the wisdom of those who have struggled, questioned and dreamed ...
Tarlov cyst might as well be a pimple
- By sciaticarghhhh · New reply 9:38 am
- Journal · 19 replies
- THey found the cyst at S1&2 when I was MRI's for back pain. Neurologist said my problem was hip bursitis...after several weeks of PT I still have extreme back pain & sciatica. It gets worse at times but ...
Social Security Disability Process
- By tmichaelroche · New reply 9:04 am
- Discussion in Finding emotional support · 5 replies
- I have begun the process of applying for SSD/SSI after my 4th Lumbar surgery ruined my back forever! I know what I am in for as far as the denials and paperwork and hearings etc.... I'm just look for ...
What do you know about Midodrine?
- By Nina372 · New reply 1:30 am
- Discussion in How my disease has changed my life · 6 replies
- How much do you know about midodrine? I take 10mg 3x daily and my BP is still really low. Does it have to build up in your system before it starts working? Or for those of you who take it can you feel ...
RND
- By senecamom · New reply 12:19 am
- Journal · 2 replies
- my 11 year old was diagnosed with RND on july 2nd at childrens in pittsburgh. we got her into outpatient therapy and the original spot of onset seems to be diminishing but her shoulder is now acting the ...
Isaac's syndrome
- By Lynn2 · New reply yesterday at 9:07 pm
- Discussion in Getting a diagnosis · 1168 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 ...
Chondrocalcinosis CPPD
- By 1irishman · New reply yesterday at 8:48 pm
- Discussion in My disease has no treatment · 12 replies
- Does anyone have this disease? Looking to find anyone interested in having a support group. How do you deal with the constant pain? Need someone to talk to who knows what it is like ...
RND at 9
- By pammiek929 · New reply yesterday at 7:40 pm
- Journal · 1 reply
- My daughter started to develop RND when she turned 9. She was diagnosed very quickly, so it did not disable her. The pain was throughout her body, but started in her hip, then to her legs, etc...She went ...
My preemie turned blue and started foaming at the mouth
- By denisehenshaw · Posted yesterday at 5:05 pm
- Journal · 0 replies
- my son was born on sept 26th 2009 but not due until dec 9th. the NICU released him on nov 4th and now it is thanksgiving and yesterday my son turned blue and started foaming.. i raced him to the ER and ...
What do you do when the dr. says we have done all we can
- By pinhead2009 · New reply yesterday at 2:52 pm
- Discussion in My disease has no treatment · 14 replies
- Yeah, Can you believe that. They said we are at the end of the road....nothing we can do for you, Gave me the name of a pain management Dr..... I want to SCREAM.... The pain is unbearable. Trigeminal ...
Lost organ!!!!!!!!
- By Nina372 · New reply yesterday at 1:46 pm
- Journal · 3 replies
- So currently I have been having problems with passing out and graying out because of my condition and after trying to explain it to my friends a hundred times and them not getting it I wrote this ...
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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.