Genetic Alliance Rare Disease & Genetic Conditions Support Community

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

By kimn1954 · New reply 2:26 am
Discussion in My disease has no treatment · 838 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 ...

Brain surgery Tuesday am-prayers please

By Liiiveinhope · New reply 12:43 am
Discussion in Finding emotional support · 9 replies
One of my dearest friends is having surgery tomorrow am to remove as much as possible of a brain tumor. The trigeminal pain has become too monsterous to bear. I'm asking for prayer for her please. In ...

Hemiplegic Migraines and permanent left vision loss

By latisha39 · New reply yesterday at 9:14 pm
Journal · 8 replies
I have recently been diagnosed with Hemiplegic Migraines. However my doctor can't explain why i have now permanently lost vision in my left eye. When i have migaines it still comes and goes but there ...

idiopathic anaphylaxis

By yellowroseli · New reply yesterday at 6:11 pm
Discussion in Getting a diagnosis · 2 replies
I have been diagnoised with idiopathic anaphylaxis. I have been having anaphylaxis for the past year,22 episodes. I was wondering how you were diagnoised by your Dr. for idiopathic anaphylaxis. My bone ...

tarlov cyst surgery

By Pam858 · New reply yesterday at 5:39 pm
Discussion in Finding emotional support · 1 reply
I am in the process of scheduling surgery with Dr feigenbaum in Kansas City for a tarlov cyst and a laminectomy at L4-L5. Probably will be mid July.I saw the posts from 2009 and 2012. I would love to ...

Mast cell site

By josie75 · New reply yesterday at 5:05 pm
Discussion in Getting a diagnosis · 252 replies
Hi all , I have done mast cells site .it covers all aspects inc - About mast cells, how there triggered - The contents released - Mast cell conditions and complications of mast cell like - kidney stones ...

Weekly Tip #5: Early Language and Literacy Development

By sromesgene · Posted yesterday at 5:02 pm
Discussion in My child and school · 0 replies
Early language and literacy development in children is essential to their overall growth and success. Washington Learning Systems (http://www.walearning.com) offers resources for parents, early childhood ...

sps experts? nyc area but will travel

By CaveDragon · New reply yesterday at 4:54 pm
Discussion in Finding a doctor · 19 replies
Hey all. My husband has now had a second GAD65 test that came back negative (the first was positive but low). He just had a spinal tap and we are waiting for those results, but we are told it will take ...

drug induced parkinsons, any advise on this

By 3littlepegs · New reply yesterday at 3:44 pm
Discussion in How my disease has changed my life · 2 replies
On top of all the other things i feel like a magnet at the min attracting everything. My new meds for my newly diagnosed Mastocytosis Urticaria pigmentosa that i was prescribed and only just started taking ...

tarlov cyst

By Pam858 · Posted yesterday at 12:52 pm
Journal · 0 replies
I am having tarlov cyst surgery and a laminectomy at L4 L5 soon. Untested in hearing from people who have had these cysts or had the surgery ...

OPLL

By Baby777 · Posted yesterday at 9:24 am
Discussion in Finding emotional support · 0 replies
I have OPLL and need some information about this rare disease. I`m a Filipino but residing in Japan for more than 20 years now. I have consulted two Japanese doctors and the last one from Keio University ...

Cauda Equina Syndrome

By abcdpete · New reply yesterday at 9:13 am
Discussion in Finding emotional support · 1 reply
basically after getting sciatic pains for two years my disk finally ruptured last summer and left me with cauda equina syndrome, as a 24 year old lad theres not much worse news you can hear when your ...

Left Adrenalectomy

By MarshaR · New reply May 21, 2013
Discussion in Getting a diagnosis · 11 replies
Hi! I've been diagnosed with Conn's syndrome. I'm having my left adrenal gland removed next month. Anyone have any comments/suggestions/experiences with a left adrenal removal? What should I expect ...

TMEP

By SewQueen · New reply May 21, 2013
Discussion in Getting a diagnosis · 6 replies
OK, so finally after several years of a petechial rash all over my body and asking Doctors what is causing this. I finally found a dermatologist who was wiling to do a skin biopsy. Biopsy results came ...

A prisoner in my own body thanks to RSD

By ememk4 · New reply May 21, 2013
Journal · 9 replies
Im 15 and have RSD in the right side of my body in many different spots. I was diagnosed in march and have been waiting it out find out what I am supposed to do from here. I started physical therapy she ...

My Mother Diagnosed with Cerebral Vasculitis

By Carrie729 · Posted May 21, 2013
Discussion in Getting a diagnosis · 0 replies
Hello, My mother was just diagnosed with Cerebral Vasculitis. Just March 9, 2013 she was a functioning working adult. She started to do off the wall things, like forgetting things she has known for years ...

DRENCHING, ALL OVER SWEATS

By 3littlepegs · New reply May 21, 2013
Discussion in How my disease has changed my life · 17 replies
WE HAD A LOVELY FAMILY BBQ TODAY AND THE SUN WAS SHINING ALL DAY. DOES ANYONE ELSE SUFFER COMPLETE BODY DRENCHING SWEATS TO THE POINT OF THEM RUNNING DOWN MY FACE, CHEST, ARMS, LEGS, WELL ALL OVER, MY ...

Periodic Fever Syndrome

By JanDanAmaya · New reply May 21, 2013
Journal · 6 replies
Hello I have joined this site as my 3 year old daughter has been suffering with high fevers at least once a month and has finally been diagnosed with periodic fever syndrome. She is being referred to ...

sneddon's syndrome

By betsy45 · New reply May 21, 2013
Discussion in Finding emotional support · 108 replies
i just found out i have sneddon's and i have no clue what to do ...

Help I need advice to get a diagnosis

By AJ88 · New reply May 21, 2013
Discussion in Getting a diagnosis · 5 replies
Hi, I need your help to diagnose what is wrong with me. I started getting recurrent pleurisy last year (August 2012) and in January 2013 on my last bout I was admitted to hospital for multiple tests ...

Log in to see more

Things you can do

Support Genetic Alliance

Discussion topics

Community leaders

Inspire others

Together we're better - Genetic Alliance Rare Disease & Genetic Conditions Support Community

Support your group with badges for your e-mail, website, blog, and more ...

About this community

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.