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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Found Out A Little Too Late

By everyday · New reply 9:44 pm
Journal · 3 replies
After the MRI, the doc, without a smile on his face, said "you have avascular necrosis of the head of both femurs." "Do you want a referral to a surgeon?" No, not for now. So coasted home and studied ...

Yeah thats my Gov. If eve u've felt like this No pun intended but, i'm glad

By Ghoss · Posted 9:35 pm
Journal · 0 replies
If only for a moment By Sonya Robertson MANNNâ€¦â€¦â€¦â€¦. You donâ€™t understand this frustration that ills me I wanna down a bottle of Tylenol3 with a swish of alcohol Hopin that when I close my eyes ...

PFS - I HOPE THIS HELPS SOMEONE

By Jessbaby · New reply 9:31 pm
Discussion in Tips for caregivers · 1 reply
My son has PFS and we finally found something that helped him thanks to a post I read on here. I was very reluctant to do this but after seeing my baby suffer month after month I chose to give it a try ...

HIDS, I need advice and support

By ethansmaker · New reply 9:28 pm
Discussion in Finding emotional support · 4 replies
Hi my name is Kathryn and I am going to tell you a story about a brave little boy.. My son's name is Ethan, he was born on February 2nd 2010. At 2 weeks my son got a high fever and we took him tot he ...

hooray I did it

By MarieTwinTubes · New reply 9:05 pm
Journal · 8 replies
I am excited that I have been able to go from a size 16 to an 18 feeding tube. In the spring I finally changed it myself for the first time. I have since wanted to see if my track has enough room to go ...

Ring 15 Chromosone

By kittycat71263 · Posted 8:49 pm
Discussion in How my disease has changed my life · 0 replies
My neice has this. I wonder are there more out there? What problems do you have? how big are you? she is 4 will be 5 in april. she wheres like 12 month infants cloths. She is behind slightly and has a ...

Tarlov cyst: new approach

By Camilleberg · New reply 8:11 pm
Discussion in Getting a diagnosis · 101 replies
New approach, new hope ? Here is a slideshow that explains the new and not invasive approach to treat arachnoiditis and tarlov cysts. Of course, as it is made under the medical rules, there is no statistic ...

My Caringbridge website

By totallycaroline · Posted 6:34 pm
Journal · 0 replies
Just for my Inspire friends to follow just in case you want updates on my health conditions :) http://www.caringbridge.org/visit/caroli nellarena ...

FIRST POST :D

By baileymrozek · New reply 6:16 pm
Journal · 1 reply
Ahhhh, wellll I just joined Inspire.com today and I am so excited! I want to meet many people that have RND as well, in hopes that it will be easier for me. I hope it will help me get through this without ...

Real T

By Ghoss · New reply 6:14 pm
Journal · 1 reply
Ive fought 2 long 2 give in despite my knoweledge of my high tolerance for pain meds so on and so on i jus wanna vent ...

Things Happen for A Reason

By stronghold_8 · New reply 6:13 pm
Journal · 1 reply
Miss my mother terribly! She was such a good mother. Its hard to believe that she will miss seeing me graduate high school, my junior prom, homecoming, go off to college, get married, and see her first-born ...

Wegener's Disease

By dlrs · New reply 6:02 pm
Discussion in My disease has no treatment · 1 reply
Does anyone else have Wegener's Disease? I was diagnosed with Sarcoidosis last Dec. (09) and the doctors office called recently and said blood work confirms that I also have Wegener's ...I can't find ...

SNUC

By stronghold_8 · New reply 5:57 pm
Discussion in My disease has no treatment · 1 reply
As far as doctors know there is no cure. My mother died of it five years ago after a year long battle which is as far as anyone has made it with the disease. People who say they have survived this disease ...

"HELP WITH DOMESTIC VIOLENCE"

By The-Dreamer · New reply 3:42 pm
Journal · 3 replies
Okay people of all type's of Organizations here on Inspire...I was wondering do you guys have old Cell Phone laying around the house,maybe in the closet,drawers,under the bed or even under your cushion ...

Only time will tell

By Ghoss · New reply 1:46 pm
Journal · 5 replies
I get depressed a lot feeling as though i'm nothing more than GODs joke to the world. I have noone i can really talk to about anything in regardes to my life but especially, when it comes to my illness ...

Myofibrillar Myopathy

By 1fixitman · New reply 1:05 pm
Journal · 16 replies
Myofibrillar myopathy is a very rare form of Muscular Dystrophy and by itself has different causes and effects. Some people are affected slowly while others are have a rapid onset. Mine started when I ...

SNUC

By rarebear · New reply 1:03 pm
Discussion in Finding emotional support · 7 replies
How can you recover from losing a child to this most terrible form of Cancer... we are desperate ...

Cramp Fasciculation Syndrome

By chsdarkhorse · New reply 7:10 am
Journal · 37 replies
I was dx with CFS in March of this year at Emory and was prescribed Oxcarbazepine. What a wonderful feeling not to have severe cramping. I felt almost normal again but recently my cramps have come back ...

Back when everything began..

By Tinkerbot · New reply yesterday at 9:20 pm
Journal · 2 replies
May 2010 I went in to have a basic arthroscopy and came out with a lateral release on my left knee.. shortly after my knee collapsed and my night mare began. I fell landing on my right hip, just a simple ...

New to Mastocytosis and already starting to lose hope!!!

By Jim_From_Tex · New reply yesterday at 7:56 pm
Discussion in Finding emotional support · 24 replies
I am new to masto (about six months), but not new to the symptoms. I have had stomach problems for the last 4 years. I have been diagnosed with a cutaineous form of masto through skin biopsies (TMEP ...

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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.