Discussions

Oculopharyngeal Muscular Dystrophy

ebiggs

Sneddon syndrome

kworkman
  • By kworkman · Posted yesterday at 6:31 pm
  • In Getting a diagnosis · 0 replies
  • Has any one had trouble finding a doctor to diagnose and treat Sneddons Sy ndrome. I keep going in circles every doctor I sees tells me to see a different doctor ...

Help I need advice to get a diagnosis

AJ88
  • By AJ88 · Posted yesterday at 6:18 pm
  • In Getting a diagnosis · 3 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 ...

Brain surgery Tuesday am-prayers please

Liiiveinhope
  • By Liiiveinhope · Posted yesterday at 12:54 pm
  • In Finding emotional support · 3 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 ...

Diagnosis help

Harvest
  • By Harvest · Posted yesterday at 9:32 am
  • In Getting a diagnosis · 0 replies
  • Hi I have a 10 year old son whom was thought to have Marfan Syndrome however upon cardio examinations & a full body x-ray, it maybe that he has Snyder Robinson syndrome which is a syndrome that has Marfaniod ...

A Little Girl With Giant Axons....

runnergirl1
  • By runnergirl1 · Posted yesterday at 8:31 am
  • In My disease has no treatment · 0 replies
  • “When you hear hoof beats, think horses, not zebras.” So goes the mantra of first-year medical students. If a common disease is a horse and a rare disease a zebra, then giant axonal neuropathy (GAN ...

Holy Cow

Guitarguy123
  • By Guitarguy123 · Posted May 19, 2013
  • In Getting a diagnosis · 1 reply
  • Hi all, It been 10 years of confusion. All I can say is holy cow. So many doctors, specialists, and Internet searches. Finally, last week my cardiologists diagnoised me with POTS and then a bell went ...

Hemiplgic Migraines and permanent vision loss in left eye

latisha39
  • By latisha39 · Posted May 18, 2013
  • In Getting a diagnosis · 0 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 ...

Spherocytosis

Avaddimom
  • By Avaddimom · Posted May 17, 2013
  • In Getting a diagnosis · 6 replies
  • Hello I am 31 years old and I have spherocytosis. I still have my spleen however as of late it has been swelling a little or maybe a lot (I'm so used to the pain I can't tell anymore). My eyes are very ...

Spherocytosis

csmp
  • By csmp · Posted May 16, 2013
  • In Tips for caregivers · 0 replies
  • Does anyone have information on children's leg cramps associated with spherocytosis. Is there a difference between those that happen during the night or during play ...

Left Adrenalectomy

MarshaR
  • By MarshaR · Posted May 16, 2013
  • In Getting a diagnosis · 5 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 ...

gastrocrom side effects

Cape
  • By Cape · Posted May 15, 2013
  • In Getting a diagnosis · 0 replies
  • Not sure if this is the right board for this, but has anyone had burning when urinating as a side effect of gastrocrom? And if so, is it something I should be concerned about? I've been taking it for ...

PML

markyuk

Weekly Tip #4: Camps for Kids with Special Needs

sromesgene
  • By sromesgene · Posted May 14, 2013
  • In My child and school · 0 replies
  • What is your child doing this summer? Across the US, camps offer an opportunity to learn new skills, meet new people, and experience new adventures. Several organizations provide lists of camps for children ...

Share your advocacy stories

sromesgene
  • By sromesgene · Posted May 14, 2013
  • In Tips for caregivers · 0 replies
  • Genetic Alliance is partnering with Parent to Parent USA (P2P) and Family Voices (FV) to collect resources that will support individuals who wish to act as advocates on behalf of themselves, their families ...

Share your advocacy stories

sromesgene
  • By sromesgene · Posted May 14, 2013
  • In Financial issues · 0 replies
  • Genetic Alliance is partnering with Parent to Parent USA (P2P) and Family Voices (FV) to collect resources that will support individuals who wish to act as advocates on behalf of themselves, their families ...

Share your advocacy stories

sromesgene
  • By sromesgene · Posted May 14, 2013
  • In How my disease has changed my life · 0 replies
  • Genetic Alliance is partnering with Parent to Parent USA (P2P) and Family Voices (FV) to collect resources that will support individuals who wish to act as advocates on behalf of themselves, their families ...

Share your advocacy stories

sromesgene
  • By sromesgene · Posted May 14, 2013
  • In Getting a diagnosis · 0 replies
  • Genetic Alliance is partnering with Parent to Parent USA (P2P) and Family Voices (FV) to collect resources that will support individuals who wish to act as advocates on behalf of themselves, their families ...

traps

vikki83
  • By vikki83 · Posted May 13, 2013
  • In Tips for caregivers · 0 replies
  • my son is 12 nearly 13 he has traps and is agony nearly all the time the only thing he doesnt get is the rash but his attacks are so close together now they are almost constant ..He can no longer be treated ...

Mastocytosis? In need of some help!

Nrdeco
  • By Nrdeco · Posted May 13, 2013
  • In Getting a diagnosis · 9 replies
  • Hello!! I am new here & was hoping some of you could be of help to me. I am 30 years old and have been having strange episodes for the past 10 years. The doctors in my area don't know what it is & keep ...

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