NORD Rare Disease Support Community

The NORD Rare Disease Support Community connects patients, families, friends and caregivers for support and inspiration... More about this group

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My Own Little Pitty Party.

By TammyP0503 · New reply yesterday at 11:58 pm
Journal · 2 replies
Today I had one of my own little pitty party's I call them. I just go into the bathroom and turn on the fan and sit in there and cry. I get it out of my system, sometimes I talk to God, sometimes not ...

compartment syndrome

By kittun · Posted yesterday at 10:50 pm
Discussion in How my disease has changed my life · 0 replies
HAS ANYONE BEEN DIAGNOSED WITH " COMPARTMENT SYNDROME'' I WAS DIAGNOSED 2 YRS AGO AND HAVE HAD 3 SURGURIES AND STILL EXPERIENCING THE THROBBING ACHING IN MY CALVES, BUT FOR THE PAST YR OR SO IT HAS SPREAD ...

RSD

By kejoshami3 · New reply yesterday at 9:45 pm
Discussion in Finding emotional support · 4 replies
My daughter is 10 yrs old and was diagnosed with RSD about a year ago but has been fighting this awful disorder for a couple of years. She has recently been in Drs. Sherry program at Children's Hospital ...

periodic fever syndrome

By jess10060 · Posted yesterday at 8:53 pm
Discussion in How my disease has changed my life · 0 replies
hey analeer don't know what is your status now with your daughter but i just wanted to say to you and everyone that is going through it that i totally know how you feel. let me tell you about my life ...

My First infusion!

By Janet007 · New reply yesterday at 6:09 pm
Journal · 8 replies
I am starting my first infusion of Rituximab on May 1. Relieved to finally be getting some help!! I am a little scared since all the side effects seem not great. I have researched the drug and I have ...

Multicentric Castlemans Disease - Dr Van Rhee in Little Rock

By terrifromva · Posted yesterday at 5:12 pm
Discussion in Finding a doctor · 0 replies
My husband had a very severe encounter with MCD for the last 9 months. He was hospitalized 90% of the time and had all sorts of painful and scary issues that were sometimes life-threatening. We have just ...

Sound like a Mast Cell Disorder?

By Bruce_Hart · New reply yesterday at 3:51 pm
Discussion in Getting a diagnosis · 9 replies
Hi everyone. I just learned of the mast cell conditions and they seem to fit me very well and I would like to get tested soon. I'm very excited that I may have discovered my problem that I've had for ...

Justin passed

By sherryberrys · New reply yesterday at 3:18 pm
Journal · 33 replies
I lost justin april 26th. I went to wake him up for dialysis to find him dead. Take care everyone. Much love. Sherry ...

tarlov cysts

By kittun · New reply yesterday at 3:00 pm
Discussion in Getting a diagnosis · 11 replies
I just found out a couple days ago that i have Tarlov Cysts, but havent seen a neurosurgeon yet until they call. when the nurse called after my MRI she said I have abnormality perineural cysys associated ...

situs inversus with levocardia and asplenia

By elainabjg · Posted yesterday at 2:49 pm
Discussion in Finding emotional support · 0 replies
My 2 year old has these conditions and has to take medicine every day.she is doing good besides the occasional cold ...

Systemic masto & epipen

By cassia633 · New reply yesterday at 2:43 pm
Discussion in How my disease has changed my life · 3 replies
I spoke with a friend who is also an ER nurse. He commented that in hospital when one is in anaphylaxis their protocol does not include use of epi pen(epinephrine) if BP is over 90 systolic. His concern ...

Sun rash

By Ecooley11 · New reply yesterday at 1:06 pm
Discussion in Getting a diagnosis · 4 replies
My daughter who is 7 has had a sun allergy since she was about 3. After exposure she ends up with abdominal pain light sensitivity, headache, vomiting change in stool color and a rash. Sometimes they ...

Pseudomonas

By issy707 · New reply yesterday at 11:18 am
Journal · 3 replies
i need help getting rid of Pseudomonas from my bladder, so here is the story so far.... last week went to hospital for a kidney infection which was treated and i was allowed home but they decided to change ...

Thanks to all

By sherryberrys · New reply yesterday at 10:18 am
Journal · 2 replies
Thank you to all of you who read and posted to my post. I appreciate you all. I am here if you ever need a friend ...

NF, Fatigue, Depression

By FLiceman · New reply yesterday at 9:16 am
Journal · 6 replies
Neurofibromatosis is a horrible condintion that has so many different symptoms, even our doctors won't be able to connect them without OUR HELP. I have a primary care doctor, a Neurologist, and a Pain ...

Cranial Nerve Issues

By unsuremom · New reply yesterday at 8:27 am
Journal · 3 replies
My daughter is 6 1/2 mo old. And she is a pure mystery. Not one Dr can tell us what is going on with her. I'm not big on labels, and would rather her not be labeled. However, I also want to have some ...

Pinsky 265 - masto and "chicken skin"

By COOP8991 · Posted yesterday at 2:28 am
Journal · 0 replies
Pinsky - you posted something regarding "mystery masto " on 12/31/11 and in it you talked about having what you call "chicken skin." (Those awful white bumps that seem come up from under the skin) There ...

Looking for some emergency help for a friend

By rhf340 · New reply May 15, 2012
Journal · 7 replies
MY friends 5 year old son has a rare form of Leukemia but that is not what this is about. She found a local equestrian farm that lets sick kids go and enjoy their horses for free. The main horse that ...

WONDERFUL DOCTOR

By kingsgirl1974 · New reply May 15, 2012
Journal · 1 reply
My Dr. is Dr. Afrin in Charleston. He is absolutely wonderful!!! We, as many other Masto/MCAS patients are struggling financially. Dr. Afrin personally contacted a social worker for me, with out me knowing ...

OPLL

By sopherdorph · New reply May 15, 2012
Discussion in How my disease has changed my life · 2 replies
Does aanyone with cervicalOPLL have swelling of the legs ...

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About this community

The NORD Rare Disease Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the National Organization for Rare Disorders, an Inspire trusted partner.