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601meagan (@601meagan)

Wolff-Parkinson-White (WPW) syndrome

Heart Rhythm Conditions | Last Active: Sep 10, 2019 | Replies (16)

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@colleenyoung

Welcome @601meagan.
Here is some information about Wolff Parkinson White Syndrome from the Mayo Clinic http://www.mayoclinic.org/diseases-conditions/wolff-parkinson-white/basics/definition/con-20043508 and from the National Organization of Rare Diseases (NORD) http://rarediseases.org/rare-diseases/wolff-parkinson-white-syndrome/

I’d also like to introduce you to other Connect members @wymanjg @lizbets @billmichalski @judytru who had/have newborns and young children with heart disease. @judytru‘s daughter, for example, was born with coarctation of the aorta and aortic stenosis. She is now 27. @billmichalski‘s twin granddaughters were born with tetralogy of Fallot. Both 11 now, swim, gymnastics, dance, checkup every year at Children’s and everything going well.

You are not alone. How old is your daughter Meagan?

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Replies to "Welcome @601meagan. Here is some information about Wolff Parkinson White Syndrome from the Mayo Clinic http://www.mayoclinic.org/diseases-conditions/wolff-parkinson-white/basics/definition/con-20043508..."

Yes, hi. This is Judy Trudel and my daughter, Amy is now 28 years old and
doing well. We have some issues because of the artificial aortic valve the
Drs. inserted over a year ago. She is now on Coumadin, and if we had it to
do over again, I don’t think we would have made the choice for her to
receive an artificial valve. A homograft, natural valve would have been
best.

She is 9

Thank you for that info!!

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