NORD Rare Disease Support Community

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Fahr's Disease

By Macbeth · New reply 11:22 pm
Journal · 40 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 ...

RND

By happymomgg · New reply 11:15 pm
Discussion in My child and school · 1 reply
Part of the treatment for RND is return to normal activities. It's hard when the child is in so much pain. My daughter is now pain free after 2 months of vigorous physical therapy! That is theTREATMENT ...

Hoping the new year is better

By shan789 · New reply 9:56 pm
Journal · 10 replies
Last 2 years have been horrible for us, so I'm hoping that the new year is healthier. Over the last 2 yrs. Jake had his cecostomy, had a feeding tube for 5 months, and missed a lot of school. The year ...

Do these symptoms sound familiar?

By ivlumb · Posted 7:33 pm
Discussion in Getting a diagnosis · 0 replies
I am a woman in her early 50s who lives a healthy lifestyle and gets regular exercise. I suffered from chronic fatigue especially bad 18 yrs ago and to a much lesser degree now, then I had heat stroke ...

TOTALLY~~Amazed, Confused, Angry ~ maybe CRAZY!!!!

By MelissaShuford · New reply 7:09 pm
Journal · 12 replies
Albert Einstein once said, "the definition of INSANITY is doing the same thing over and over again expecting different results." Okay I've reached the realization that insanity is within my reach~like ...

klinefelters syndrome

By klinefeltersxxy47 · Posted 6:53 pm
Discussion in Finding emotional support · 0 replies
honestly i have seen some rare diseases here and some not so rare but Ive not met anyone else here with klinefelters syndrome is there any one else on this board with it seriously. it appears this sites ...

At NIH

By littlesis64 · New reply 6:07 pm
Journal · 9 replies
I am exhausted today, ugg! I had my MRI and CAT scan yesterday I dont know about anyone else but I get such a sore throat and horse even with my premeds after the CAT scan and everything I eat makes me ...

Lets Complicate Things a Little More~~~~~~

By MelissaShuford · New reply 5:17 pm
Journal · 4 replies
Yesterday i received a letter from the review of my sleuth heart recorder (implanted loop recorder)Stating that after review on 2/25/2010 they had attempted to contact me for several days to discuss findings ...

New to the Hereditary Spherocytosis forum

By onlysky · New reply 5:03 pm
Discussion in How my disease has changed my life · 8 replies
Hi, I just thought I'd introduce myself. It's so nice to find a current forum for people with Spherocytosis! My mom, my sister, and I all have Hereditary Spherocytosis. My sister and I both had our spleens ...

Should I have my kids tested for TRAPS mutatin

By rapas · New reply 4:51 pm
Discussion in Getting a diagnosis · 2 replies
I am an adult with Traps. I know it is a genetic mutation...would it be wise to have my children tested for mutation ...

Isaac's syndrome

By Lynn2 · New reply 4:43 pm
Discussion in Getting a diagnosis · 1277 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 ...

my 2 year old

By lilmomma0709 · New reply 4:34 pm
Discussion in Getting a diagnosis · 4 replies
my son was born in november 2007 he was normal as can be come febuary of 08 i took him to the hospital doctors said it was just a cold then he keep getting worse about 3 days later he stoped breathing ...

pots/dysautonomia

By Nina372 · New reply 4:17 pm
Journal · 20 replies
Does anyone here have experience or knowledge about getting a pace maker for their postural orthostatic tachycardia syndrome (pots ...

Support your group and raise awareness with badges

By Walter · New reply 4:04 pm
Journal · 53 replies
Hi everyone. We added a new feature today that you can use to support your groups and the organizations that sponsor them, and get the word out about the causes that are important to you. If you visit ...

Tell us how you are treated...

By ShannonZ · New reply 2:34 pm
Journal · 45 replies
at/by your doctors/nurses offices/clinics/hospitals... I am so sick of what has been going on at my doctors offices that I need to...i dont know ...build a group or protest or something... Let us know ...

frustrated

By beachrn · New reply 1:51 pm
Journal · 3 replies
Hi all, not really sure why I'm writing other than you all seem to be dealing with the same thing I am, so maybe you'll understand. I was recently diagnosed with Prinzmetal Angina. I've been dealing with ...

17 year old daughter with Tietze's syndrome....HELP!!!

By sheila_r · New reply 1:51 pm
Discussion in My disease has no treatment · 29 replies
Hello, I am new to this group... But my problem is with my 17 year old daughter who was originally diagnosed with costochondritis...but has had nothing but severe, chronic PAIN!!-(which they call: Tietze's ...

Disability Definition under Social Security Administration

By Eosboriken · New reply 12:23 pm
Journal · 1 reply
The Social Security Administration, defines disability differently from the American with Disabilities Act of 1990 (ADA). When you visit their website: http://www.ssa.gov/disability/profession als/bluebook/general-info.htm ...

pain

By trinp · Posted 12:17 pm
Discussion in Getting a diagnosis · 0 replies
i have been having this undiagnosis pain for 2 years. Hope i can get some help i have severe pain on the lt lower groin area migrates to th back and rapes around the fold of the thigh. The pain feels ...

tc? appt sched w/ Dr. Long

By tdcarson · New reply 12:15 pm
Discussion in Getting a diagnosis · 4 replies
I sent off my MRI to Dr F and Dr Long. Dr Long's office called today to sched a phone appt at the end of month. It's only been maybe 2 week since I sent it. I'm nervous but so excited to maybe finally ...

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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.