NORD Rare Disease Support Community

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Tapering Off Prednisone

By tundrabunny · New reply 6:55 am
Journal · 101 replies
I am sure many of us are struggling with tapering off prednisone. I know I am. I was curious what other people's experiences were, especially those who have managed to come off it after being on it for ...

21st may 2012

By issy707 · Posted 4:40 am
Journal · 0 replies
so yesterday i got moved wards as they had no room and just been told im being sent home to have the long line fitted, like hell!!!! there is no way im putting my un born child into have another general ...

Sound like a Mast Cell Disorder?

By Bruce_Hart · New reply 3:19 am
Discussion in Getting a diagnosis · 12 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 ...

Didn't know my condition was Piebaldism until I'm 38!!

By KookieAu · Posted 12:39 am
Discussion in Finding emotional support · 0 replies
I lived 38 years not knowing my condition had a name. I have a white patch on my right eye including my lashes and eyebrows and a patch on my head where all the hair grows white. I just thought it was ...

nk cell

By crystalandbaylee · New reply yesterday at 7:33 pm
Discussion in Finding a doctor · 3 replies
my 4 year old has nk cell deficiency. we just found out about 6 months ago,we know nothing about it and her doc really dont either. im looking for someone that might could help me with some info on a ...

Systemic masto & epipen

By cassia633 · New reply yesterday at 5:07 pm
Discussion in How my disease has changed my life · 8 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 ...

systemic mastocytosis anyone in uk with this condition

By pendelphin · New reply yesterday at 4:52 pm
Journal · 12 replies
I have had masto for 15 yr now, was diagnosed with it after falling and braking my back because of the osteoporosis, in my bones caused by the mastocytosis, I underwent a bone biopsy which came back positive.i ...

Myelofibrosis Anyone?

By runningmermaid · New reply yesterday at 4:45 pm
Discussion in My disease has no treatment · 1 reply
I have Myelofibrosis, which has been stable for quite some time. It's 5.5 years after my initial diagnosis and I do believe I've now hit the downhill slide of this disease as my red blood counts are below ...

anhidrosis

By April1977 · New reply yesterday at 3:18 pm
Discussion in Finding emotional support · 12 replies
My daughter is 4 yrs old. She was diagnosed with anhdrosis when she was a year old. Thankfully we found out when she was young, which is not common. I know of no others with this disorder and am having ...

My mothers day

By sherryberrys · New reply yesterday at 1:38 pm
Journal · 6 replies
I had decided I wasnt celebrating Mothers Day. Justin was gone and I lost my mom Sept. But I woke up today and realized I still had to fufill one last wish for my son and that was to spread his ashes ...

opll

By socaloceanlover · New reply yesterday at 12:52 pm
Discussion in How my disease has changed my life · 6 replies
i am interested if any of the members with opll think that some sort of body trauma triggered the disease of opll or did you have the disease and the trauma caused opll to grow? my husband and i have ...

Masto & my birthday

By Enig97 · New reply yesterday at 12:45 pm
Journal · 6 replies
Today is a challenging day, I am trying to enjoy the day, but right now I cannot imagine why. I have had this diagnosis for 10 days but symptoms since 2008, probably longer in retrospect. The summer session ...

Help...

By sgro · New reply yesterday at 9:33 am
Discussion in Finding a doctor · 2 replies
My father was diagnosed last year with SPS. The doctors at the hospital he is at have never dealt with this kind of disease before therefore leaving them at a loss. It's extremely hard watching my father ...

20th May

By issy707 · Posted yesterday at 9:20 am
Journal · 0 replies
so im waiting to find out if i can go home for a few hours so i can move out my flat, but its now 2:10pm and been waiting to see the doctor since 8am and need to leave by half past ! so come on doctor ...

18th May 2012

By issy707 · New reply May 19, 2012
Journal · 3 replies
so we have agreed that if i stay in and be good i wont have to have the long line in so looking after my line they have in very well! im feeling better and getting tested 3 times a week to make sure the ...

Justin passed

By sherryberrys · New reply May 19, 2012
Journal · 34 replies
I lost justin april 26th. I went to wake him up for dialysis to find him dead. Take care everyone. Much love. Sherry ...

overlapping symptoms

By COOP8991 · New reply May 19, 2012
Journal · 6 replies
I went to see my primary this AM. It was just a scheduled check-up, but since I am having problems with edema again (I had toxemia with my first pregnancy), which seemed to trigger my fibro, it's just ...

help

By lilmia · New reply May 19, 2012
Journal · 1 reply
Hi, I'm a 20 year old female and have had this problem for about 2 years and no one can seem to help me. Here are my symptoms..... Shortness of breath, hiccups(that's what doctors said they were), headaches ...

My Own Little Pitty Party.

By TammyP0503 · New reply May 18, 2012
Journal · 11 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 ...

Can someone help me

By DannyGirl03 · New reply May 18, 2012
Discussion in How my disease has changed my life · 4 replies
I have been diagnosed with several different diseases such as IC which is a bladder issue. I have had an ischemic stroke at 28. I had percarditis for two years that went undiagnosed. I have had ischemic ...

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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.