Genetics and Birth Defects Support Group

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Cranial Nerve Issues

By unsuremom · New reply 8:27 am
Journal · 3 replies
My daughter is 6 1/2 mo old. And she is a pure mystery. Not one Dr can tell us what is going on with her. I'm not big on labels, and would rather her not be labeled. However, I also want to have some ...

ONLY A BREATH AWAY....

By mybutterfly · New reply yesterday at 1:45 am
Journal · 8 replies
Jim (my dear hubby since 1975...how many years is that??) ....should be going home tomorrow!!! He's doing so very much better....sitting up....eating....even net surfing a bit :) I'm so very thankful ...

Hip Displasia

By womanofgod · New reply April 30, 2012
Journal · 3 replies
My daughter had hip surgery and happily she has her own bones still and not plastic parts. although the doctor said she will need another surgery at an older age because i belive they did have to use ...

20 months and FINALLY SITTING :-)

By iloveconducting · New reply April 27, 2012
Journal · 4 replies
Mordecai has been sitting by himself for LONG periods of time (15 minutes and more) for the past 4 days!! What a blessing! Just a few weeks ago, it didn't even seem like a possibility. When we saw his ...

EDS SUPPORT GROUP MEETING FOR LANCASTER /YORK AREA

By lori326 · New reply April 27, 2012
Journal · 1 reply
Any one interested in coming lancaster /york area are meeting for the first time on May-19th, from 3-5 pm Barnes and Nobles Fruitville Pike Lancaster ,Pa 17602 ...

another SMALL UPDATE !!

By redneckgal82 · New reply April 26, 2012
Journal · 1 reply
I havent been able to write in here for so long.... !!! I have been so busy with school and work.. My health is doing alright. my seizure have been at ease thank goodness. my junior year of university ...

TUMORS /CYSTS IN THE BONE??

By lori326 · New reply April 23, 2012
Journal · 20 replies
Any EDS patients out there have bone cysts or tumors they have been diagnosed with ??? My daughter has one in her thigh bone by growth plate and its painfull and swelling.Need to know and share,please ...

IT'S BEEN TOO LONG.....

By mybutterfly · New reply April 23, 2012
Journal · 25 replies
Have you ever be so tired....so very tired....that breathing seems a chore? Another sister passed away today....Judy battled bone cancer for four years...she was tired.... I posted a picture on my FB ...

The Inspire Q&A: Inspire talks with Howard Luks, MD

By John2 · New reply April 15, 2012
Journal · 59 replies
Dear Inspire Community Members, We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people we feel are making contributions to helping patients worldwide. We are posting ...

i need major advice

By mylilmaddie · New reply April 11, 2012
Discussion in Birth defects · 6 replies
I have always been told I can't have kids. Now I am 5 mos and having major problems. My baby has cleft LIP, Club foot, six fingers on one hand and a major heart defect. Well my drs recommend abortion ...

local support group start up

By lori326 · Posted March 31, 2012
Journal · 0 replies
We live here in lancaster pa and are reaching out to pa people and asking for a gathering or support and sharing ideas together. Together we are stronger than alone.I for one don't want to go this hefty ...

i need major advice

By mylilmaddie · New reply March 17, 2012
Discussion in Birth defects · 5 replies
I have always been told I can't have kids. Now I am 5 mos and having major problems. My baby has cleft LIP, Club foot, six fingers on one hand and a major heart defect. Well my drs recommend abortion ...

Funding

By mylilmaddie · New reply March 17, 2012
Discussion in Birth defects · 2 replies
I need advice on what im supposed to do about funding. I live in North Georgia and I'm gonna have to go 2 hrs away to atlanta for the baby to be operated on as soon as she is born. I wait tables for a ...

Mybutterfly is in the hospital

By mybutterfly · New reply March 8, 2012
Journal · 83 replies
This is Tamara, Kathy's eldest daughter. She was admitted yesterday with pneumonia. She is in a lot of pain and has requested that I make her friends on inspire aware so that you all can pray. Please ...

MAMA'S GONE HOME

By mybutterfly · New reply March 4, 2012
Journal · 95 replies
My dear sweet Mama went Home today....to be with Jesus. My heart is breaking... I know the wonderful side of it.. She's in the place where she's never again know pain or sorrow. She united with those ...

SECOND TIME AROUND.....

By mybutterfly · New reply February 23, 2012
Journal · 17 replies
well....we're back in the hospital. Jim was supposed to have another lithotripsy done today...but.....turns out he has a pretty serious UTI. I'm sooo glad his wonderful and caring dr took the time to ...

The Inspire Q&A--Inspire talks with Susan Grant

By John2 · New reply February 15, 2012
Journal · 31 replies
Dear readers, We at Inspire are pleased to bring you the latest in a series of interviews with people making contributions to helping patients and caregivers worldwide. We are posting these interviews ...

THE EYE OF THE STORM....

By mybutterfly · New reply January 26, 2012
Journal · 9 replies
I want to say it...again....to my friends. The new year is here... 2012!!! ...can you believe it???? I pray that each of you have a wonderful...prosperous new year. One full of love...adventure....and ...

returned to school

By redneckgal82 · New reply January 24, 2012
Journal · 1 reply
I am happy I returned back to the university I attend.. I am a junior in fine arts and a minor in media arts with pursing a degree in engineering!!! I went through a seizure back in november 30th 2011 ...

Chairs,Chairs Everywhere!

By momofcuddlebug · New reply January 20, 2012
Journal · 5 replies
On Thursday we just received a special order bath chair for my son. I was so excited about it but also nervous. I wasn't sure how he would like sitting in it while taking a bath. Well, my fiance helped ...

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