Genetics and Birth Defects Support Group

Inspire connects patients, families, friends and caregivers for support and inspiration... More about this group

Five million

By Brian · New reply May 18, 2013
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 ...

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

By Jer_ · New reply May 18, 2013
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 ...

NEED BETTER AFFORDABLE HEALTH INSURANCE.

By redneckgal82 · New reply May 16, 2013
Journal · 2 replies
I need better insurance so I can get my NF1& my scoliosis checked out plus have masses on my spine. I am in pain a lot & I do exercise & very active so what to do? To find better insurance ? I am worried ...

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 ...

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 ...

Katelyn's Story

By kelkitson · New reply May 14, 2013
Journal · 3 replies
Katelyn was diagnosed at 24 weeks in utero with severe hydrocephalus. At 28 weeks, my husband and I were told her prognosis was grim due to the severe pressure in Katelyn's head based off of MRI, Ultrasound ...

My visit to the doctor yesterday...

By CharMangaTastic · New reply May 10, 2013
Journal · 14 replies
So I went to see my doctor and shes changed my gabapentin now to 800mg three times daily from 2x 300mg 3 times daily so hoping they work. She won't give me sleeping tablets for my insomnia cos she said ...

A new Inspire report in collaboration with Stanford Medical School

By Brian · New reply May 5, 2013
Journal · 84 replies
As many of you know, Inspire has a professional collaboration with the Stanford University School of Medicine. Inspire members have written personal stories for the Stanford Scope column. I am pleased ...

A different sort of grief

By Britnee26 · Posted April 30, 2013
Journal · 0 replies
I realized today that this grief is much different than miscarrying and not really knowing why or being so early you barely had a chance to attach yourself to the amazing news of being pregnant. It is ...

Step 2: Cremation

By Britnee26 · New reply April 30, 2013
Journal · 1 reply
Called the funeral home to cremate Caleb. Coffee with 2 friends for 4 hours today ...

Losing a child who had anacephaly/encephalocele at 17 weeks

By Britnee26 · New reply April 29, 2013
Journal · 3 replies
I'm trying this out because I don't know where to go nor how to deal with this. Last Monday I found out that there was a problem with my baby, when I did the 13-week Phase 1 Prenatal Screening ultrasound/blood ...

Encephalocele/Neural Tube Defect/Induced Labour/Loss

By Britnee26 · Posted April 29, 2013
Discussion in Learning your child has a genetic condition or birth defect · 0 replies
I'm trying this out because I don't know where to go nor how to deal with this. Last Monday I found out that there was a problem with my baby, when I did the 13-week Phase 1 Prenatal Screening ultrasound/blood ...

JUST SO YOU'LL KNOW~~~~

By mybutterfly · New reply April 21, 2013
Journal · 168 replies
I know nothing.....absolutely nothing!....except....Jesus never fails!! I may not understand His way....like when our loved ones have to leave.....or why life takes the crazy twists and turns it does ...

LANCASTER PA,EDS SUPPORT GROUP MEETING

By lori326 · New reply April 20, 2013
Journal · 7 replies
I am having an EDS SUPPORT GROUP meeting on April 20th,from 3-5 pm at Barnes and Nobles. All welcome ...

The Inspire Q&A: Inspire talks with Deanna Attai, MD

By John2 · New reply April 16, 2013
Journal · 16 replies
Dear members, We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people who are making contributions to helping patients and caregivers worldwide. The people in this ...

Awake yet again

By CharMangaTastic · New reply April 13, 2013
Journal · 9 replies
Well my insomnia is still here to bite me even more in the backside, though I am managing to sleep which I know some of you can go days without sleeping, its still a pain because I don't want to be awake ...

Insomnia going hand in hand with my pain!

By CharMangaTastic · New reply April 11, 2013
Journal · 21 replies
Well its currently 7:15am and I've not been to sleep last night, I find I'm getting stuck back in the rut of not sleeping then ending up asleep around 10am and not waking up till 5pm which then makes ...

Grown out of PKU?

By jsmith12g · Posted April 8, 2013
Discussion in Living with a genetic or birth defect · 0 replies
Hello, all. I was born with PKU (obviously) but as time went on, my levels went lower and lower (average around 5?). By the age of 7 I was no longer having my phe levels checked at all. -Now fast forward ...

EDS SUPPORT GROUP IN LANCASTER PA

By lori326 · New reply April 5, 2013
Journal · 4 replies
EDS SUPPORT GROUP MEETS ON APRIL 20TH FROM 3-5 PM AT BARNES AND NOBLES IN LANCASTER PA. Anyone can come with family friends for local support .Even if you have to drive come share your story with us ...

Please sign my Ehlers Danlos Syndrome Petition

By GumbyDav · Posted April 3, 2013
Discussion in Living with a genetic or birth defect · 0 replies
Anyone living in the US, please sign my petition to make Ehlers Danlos Syndrome recognized as a disability! https://petitions.whitehouse.gov/petitio n/proclaim-ehlers-danlos-syndrome-eds-di sability/yzvYyxGF ...

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Inspire connects patients, families, friends and caregivers for support and inspiration.