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

Mac Tel Support

kimn1954
  • By kimn1954 · New reply 1:12 am
  • Discussion in My disease has no treatment · 2762 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 ...

11 year daughter having migraines

bwhit1225
  • By bwhit1225 · New reply yesterday at 4:39 pm
  • Discussion in Getting a diagnosis · 3 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 ...

"A wake-up call from a young e-patient: 'I need to be heard'”

John2
  • By John2 · Posted yesterday at 3:22 pm
  • Journal · 0 replies
  • From: John Novack, Communications Director, Inspire 4/15/14 Dear members, I am writing to share with you a new guest column in "Scope," the Stanford University School of Medicine's medical blog: "A wake-up ...

Tackling this

AlexMelina
  • By AlexMelina · New reply yesterday at 2:08 pm
  • Journal · 1 reply
  • So today Ive decided to start doing everything in my power to relieve myself of symptoms from TMEP. Im thankful that I appear to have a mild case of it, but I do not want it to escalate. First things ...

Decided to post my entire story (mostly)

kdg1213
  • By kdg1213 · New reply yesterday at 1:26 pm
  • Journal · 24 replies
  • I am a 23 year old girl who was overweight for most of her life. I lost a bunch of weight in an unhealthy way back in 2009. Then I decided to get healthy. In January of 2011 I started to develop a problem ...

TMEP-autoimmune?

AlexMelina

yay

kdg1213
  • By kdg1213 · New reply April 14, 2014
  • Journal · 14 replies
  • Today was the firs time I really tested my heart since all these surgeries began, and I feel GREAT! I am so proud or myself ...

Isaac's syndrome

Lynn2
  • By Lynn2 · New reply April 14, 2014
  • Discussion in Getting a diagnosis · 1479 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 ...

Mcad and oxalates

tiny1966
  • By tiny1966 · New reply April 14, 2014
  • Discussion in How my disease has changed my life · 8 replies
  • Here's an FYI in case this is something you may not know. There are foods that are low histamine but are high in oxalates. Oxalates are histamine releasers. I have been battling a huge flare and am reacting ...

Taking the sting out of cancer

joyceg98
  • By joyceg98 · New reply April 14, 2014
  • Journal · 4 replies
  • Mike and I spoke with Shannon and Dave from Wind River Cancer Wellness Retreats in the beautiful woods of North Carolina. They offer retreats -- free of charge -- to men and women living with any kind ...

mysymptom tracker

tiny1966
  • By tiny1966 · New reply April 14, 2014
  • Discussion in How my disease has changed my life · 1 reply
  • Have been using an app that is made for iphone, ipad and android devices called mysymptom tracker. it really gets into the nitty gritty, you can record food, meds, symptoms and much more. By time and ...

Left eye swell and blister

Jljar
  • By Jljar · Posted April 14, 2014
  • Journal · 0 replies
  • Hello I am a 46 young woman For the last 4 years stating suffering from an strange swelling of my left eye. The fist times with the swell had high fevers and no blister but I the past year specially I ...

MTHFR Genetic & Antibiotic Toxicity Dr! Woo HOO!

mebefloxed
  • By mebefloxed · New reply April 13, 2014
  • Journal · 7 replies
  • Good morning everyone :) I am happy to report I found a Dr that is FINALLY helping me with my chemical sens from antibiotics, and my MTHFR gene issues ( C677t and compound het A1298C A/C ). I have been ...

OPLL

fearney1971
  • By fearney1971 · New reply April 12, 2014
  • Discussion in Finding emotional support · 5 replies
  • We need a support GROUP. FOR OPLL ASAP. SO MANY PEOPLE HAVE. ASKED. WHAT DOES. IT TAKE TO GET. ONE ...

Ilene, Lizzie and Joyce at IKCC

joyceg98
  • By joyceg98 · Posted April 11, 2014
  • Journal · 0 replies
  • Ilene Sussman, Lizzie Perdeaux, and Joyce Graff attended the International Kidney Cancer Coalition meeting in Amsterdam. Many of our global VHL partners were there too: Dr. Rachel Giles of the Netherlands ...

looking for people with a son with klinefelters in australia

emersonsmum
  • By emersonsmum · New reply April 10, 2014
  • Discussion in My child and school · 2 replies
  • hi everyone :) i am interested in talking to people with a child with klinefelters syndrome. I am having such a hard time getting him the help that he so desperately needs at school, mainly because this ...

Histamine Intolerance and HistDAO

kabloom
  • By kabloom · Posted April 10, 2014
  • Discussion in How my disease has changed my life · 0 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 ...

Just Diagnosed

Jewel142
  • By Jewel142 · New reply April 10, 2014
  • Discussion in Getting a diagnosis · 1 reply
  • Hi Everyone, I was just diagnosed with TMEP, I have it on my skin and in my organs. Yesterday I went for test to see if I have it in my bone marrow. I tried to look on line to see what this actually means ...

Conns

curtew
  • By curtew · New reply April 10, 2014
  • Discussion in Getting a diagnosis · 3 replies
  • OK I had surgery Jan 2014 for a tumor on my right adrenal gland. Things were going great BP extremely low where it should be. But now my blood tests are coming back that my potassium is elevated and keeps ...

The video my big sista made for me!!

MinionFreak2014
  • By MinionFreak2014 · New reply April 10, 2014
  • Journal · 10 replies
  • http://youtu.be/jyrDiUMUOeU The viedo my big sista made bout me a few years ago man i have accomplished so much since then but diz viedo means a lot to me and im sure it will mean a lot to you too ...
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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.