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

Need an ocular inmunogist

Jljar
  • By Jljar · New reply yesterday at 10:25 pm
  • Discussion in Finding a doctor · 1 reply
  • I need a Dc specialized in ocular inmunology in the NY, NJ and PA that accepts Oxford United Health Care / Liberty Will appreciate so much any leads Thank you ...

organic chemical

Kathie375
  • By Kathie375 · New reply yesterday at 3:46 pm
  • Discussion in How my disease has changed my life · 3 replies
  • I was exposed to about 12 organic chemicals in my well many many years ago. I have Castleman's Disease and Systemic Mastocytosis,, I was told many years ago I would not live 3 months because I had cancer ...

Multi Centric Castlemans Disease

NatalieConti
  • By NatalieConti · New reply yesterday at 2:36 pm
  • Journal · 4 replies
  • Hi guys, My fiance has been fighting MCD for 3 years now. We have tried natural remedies and he has been seeing a haematologist as well who put him on steroids which only masked the symptoms. We now are ...

Been off for awhile... Been a struggle

tiny1966
  • By tiny1966 · New reply yesterday at 2:24 pm
  • Discussion in How my disease has changed my life · 12 replies
  • I've been off for awhile. So completely overwhelmed. Been in a massive flare for months. Can't seem to pull out no matter what we do. I just had two skin biopsies, possible up or tmep. Total emotional ...

Bone crushing depression advice, please...

Pocono_Lorene
  • By Pocono_Lorene · New reply yesterday at 10:46 am
  • Discussion in Finding emotional support · 10 replies
  • So.. i was making the Easter Baskets the other night and thought I could have (maybe) a piece of dark chocolate with raspberry filling. It was 100 % Organic, so I thought "maybe" it would be okay. MAYBE ...

Mac Tel Support

kimn1954
  • By kimn1954 · New reply yesterday at 3:35 am
  • Discussion in My disease has no treatment · 2797 replies
  • This is a continuation of the discussion called "Idiopathic Juxtafoveal Telangietasis Type 2" started on July 15 2012, under the NORD Rare Disease Support Community, in the My Disease Has No Treatment ...

Iemand uit Nederland met Tarlov cysten

Dutcholdie
  • By Dutcholdie · New reply yesterday at 3:14 am
  • Discussion in Finding emotional support · 4 replies
  • Hello, Is someone from the Netherlands (Holland) on this site? Medical treatments in the US or Canada are not possible for us and it would be nice to have contact with people with Tarlov cysts here ...

A new story i wrote tell me wat ya think!!(:

MinionFreak2014
  • By MinionFreak2014 · New reply April 23, 2014
  • Journal · 7 replies
  • God is always there! Do you ever feel like you’re alone? You’re not worth it? Or that nobody loves you? Well stop thinking that because its not true, God is always there, he thinks you’re worth it and ...

CANCER IS SO LIMITED

MAXINEZ
  • By MAXINEZ · New reply April 23, 2014
  • Journal · 19 replies
  • Am having difficulty sleeping tonight so here I am on the computer. Maybe it is the chemo I had today. Know many go through this so am not complaining. Found the following on the wall of my Oncologist ...

I did it again...

hinsopa
  • By hinsopa · New reply April 23, 2014
  • Journal · 11 replies
  • Check out my new post at http://www.canceremotions.wordpress.com Come join us over at my blog ...

Mast cell disorder

tamarrillo
  • By tamarrillo · New reply April 23, 2014
  • Discussion in Getting a diagnosis · 11 replies
  • Hi everyone, It's been awhile since I posted on here. Hope you all are having a good day. :) I am recovering from Bronchitis and Sinus Infection. Had a touch of something when left for vacation to Florida ...

Autoimmune??

lirpA81
  • By lirpA81 · New reply April 23, 2014
  • Discussion in Getting a diagnosis · 3 replies
  • Hi everyone, I'm new to the site. Just wanted to ask if anyone else shares my symptoms. I was diagnosed last year at 31 with primary open angle glaucoma and this year I started having pain behind my eyes ...

Pittsburg

Linthicum
  • By Linthicum · New reply April 22, 2014
  • Discussion in Getting a diagnosis · 2 replies
  • Anyone know of a doc in the Pittsburg area who know about/is treating Mast Cell patients. Someone contacted me to ask about a doctor but I live near Baltimore (still without a doc, by the way) and would ...

sneddon's syndrome

betsy45
  • By betsy45 · New reply April 22, 2014
  • Discussion in Finding emotional support · 276 replies
  • i just found out i have sneddon's and i have no clue what to do ...

mastocytosis

Rose1932
  • By Rose1932 · New reply April 22, 2014
  • Discussion in How my disease has changed my life · 43 replies
  • I was diagnosed with mastocytosis a few years ago and have been on hydroxyurea, zyrtec and pepcid. My main problem is severe itching. I had this severe type some years ago and it has been wonderful not ...

GOOD, BAD AND THE UGLY

MAXINEZ
  • By MAXINEZ · New reply April 22, 2014
  • Journal · 26 replies
  • The Good is that I am married to the most wonderful, sweetest, supportive and caring wife in the world. The Good is that I am receiving support from the great people here at Inspire. I do not have the ...

Histamine Intolerance and HistDAO

kabloom
  • By kabloom · New reply April 22, 2014
  • Discussion in How my disease has changed my life · 5 replies
  • Hello I am new to this site but wanted to start a discussion about Histamine Intolerance. I am histamine intolerant but only found out 5 months ago after 21 years of searching for answers to multiple ...

11 year daughter having migraines

bwhit1225
  • By bwhit1225 · New reply April 22, 2014
  • Discussion in Getting a diagnosis · 10 replies
  • My daughter has been having symptoms now for about a year and they are progressively getting worse. At first they thought it was Vocal Cord Dysfunction. She would have trouble breathing and be dazed and ...

Isaac's syndrome

Lynn2
  • By Lynn2 · New reply April 22, 2014
  • Discussion in Getting a diagnosis · 1495 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 ...

A week of celebration

AlexMelina
  • By AlexMelina · Posted April 21, 2014
  • Journal · 0 replies
  • This past week my family was in town from Minnesota, I put every thought of my TMEP in the back of my mind and just partook. I was drinking and eating whatever everyone else was. There was a couple times ...
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The Genetic Alliance Rare Disease & Genetic Conditions Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by Genetic Alliance, an Inspire trusted partner.