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

Spherocytosis

By Avaddimom · New reply yesterday at 8:15 pm
Discussion in Getting a diagnosis · 1 reply
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 ...

I went away to come to Life!!

By Billie_Jo · New reply yesterday at 6:04 pm
Journal · 8 replies
Hi Everyone.... First, let me apologize for my random absences.... That's why some of you have my email, and even phone to text.... I kind of have a habit of disappearing for a time, then popping back ...

Five million

By Brian · New reply yesterday at 4:06 pm
Journal · 205 replies
Dear members, Yesterday, Inspire reached a milestone: five million posts written by members! Each of these posts, and the 700 million words they contain, are a simple measure of how much we all do to ...

Be Encouraged...Life isn't over yet!

By chaplainstevens · New reply yesterday at 3:27 pm
Journal · 9 replies
Some days I am in so much pain I just tire of living...but then God will let something happen to remind you you still have work to do. I had a lady that I met in the Psych Hospital last year that was ...

Burning Mouth Syndrome - want to connect with others

By thisdogdonthunt · New reply yesterday at 12:41 pm
Discussion in My disease has no treatment · 5 replies
I've posted about this before but now have a 'formal' (if that's really possible with any idiopathic disease) diagnosis of Burning Mouth Syndrome. My mission is to find as much relief as I can as I'm ...

Flu-like Symptoms Caused an Emergency CT Scan and CBC Today.

By Jer_ · New reply yesterday at 11:26 am
Journal · 18 replies
This morning began in a left inguinal lymph node being a little touchy during a shower. I passed it off for being out in the yard all weekend. However, when I drove to work and got out of the vehicle ...

Hemiplegic Migraines and permanent left vision loss

By latisha39 · New reply yesterday at 8:13 am
Journal · 1 reply
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 ...

Hemiplgic Migraines and permanent vision loss in left eye

By latisha39 · Posted yesterday at 7:11 am
Discussion 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 ...

PT

By Rondogg333 · Posted yesterday at 4:57 am
Journal · 0 replies
I went my first PT since coming home in march. He seems positive he can help with my balance. Yay ...

A prisoner in my own body thanks to RSD

By ememk4 · New reply May 17, 2013
Journal · 5 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 ...

Unicentric Castleman's Disease

By Scattel2z · New reply May 17, 2013
Discussion in Getting a diagnosis · 6 replies
I'm a 30 year old male living in California. In 2008 I went to the ER for acute abdominal pain with exploding diarrhea. The abdominal CT scan showed 2 swollen lymph nodes but otherwise normal. In 2011 ...

Introducing our new Gaucher's Disease Support Community

By Walter · Posted May 16, 2013
Journal · 0 replies
Dear members, Today we launched a new support community focused specifically on Gaucher's disease. If you or someone you care for are affected by Gaucher's, we hope you'll sign up for this new community ...

debilitating

By jollytayt · New reply May 16, 2013
Journal · 14 replies
I have zero clue as to how I am supposed to cope with this disease. I have tried all of the meds, all the combinations thrown at me. Nothing has worked and I am deteriating rapidly. I am having TIA's ...

Anaphylaxis and angioedema

By 123loving · New reply May 16, 2013
Discussion in Getting a diagnosis · 8 replies
I am new to this site!! Three weeks ago I was admitted into the hospital with my upper airways closing! Very scary but they did not call it anaphylaxis, called it croup! Since then I have been to an ENT ...

PFAPA, Periodic Fever Syndrome in 3yr old. Possible break through!!!

By MaryMumOf2 · New reply May 16, 2013
Discussion in Getting a diagnosis · 9 replies
I think I may have come up with some answers to the above and felt compelled to share so other sufferers/parents could maybe have the same success as we have! My 3 year old had been suffering with 3 weekly ...

Mac Tel Support

By kimn1954 · New reply May 16, 2013
Discussion in My disease has no treatment · 818 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 ...

keystone tesing

By lori326 · Posted May 16, 2013
Journal · 0 replies
Anyone know about the new keystone tesing in pa and how to deal with EDS/disability and needing to test at a different time/day than the rest. My daughter is having trouble getting there to take AND FEELING ...

Spherocytosis

By csmp · Posted May 16, 2013
Discussion 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

By MarshaR · Posted May 16, 2013
Discussion in Getting a diagnosis · 0 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 ...

Here I am

By Churchmom23 · New reply May 15, 2013
Journal · 9 replies
I am new to inspire and this group, so I thought I would introduce myself and share a bit of my struggles. I am a single mother of three boys ages 19, 17, and 15. My 17 year old son was diagnosed with ...

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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.