Noonan Syndrome (NS)
Support Group Introductions

Durbin, Karen (as at 5/01)

Hello everyone, my name is Karen Durbin. My husband's name is Mark, and we have a beautiful daughter named Tanela who will be 11 on
07-28. Tanela has NS as well as Primary Pulmonary Hypertension.

Tanela was diagnosed with NS at age 3 and PPH at age 6. She is very small still for her age (52 lbs. & 44 in.), eats very little, wears glasses,
is very emotional, possibly has some level of attention difficulty, can be shy and yet is the epitome of a social butterfly when she wants to be.
She has had an ASD repair at age 20 mos. Physically she has several of the facial anomalies as well as a barrel chest.

On October 12, 2000, Tanela received a double lung transplant to correct her Primary Pulmonary Hypertension, after having been on Flolan for almost four years to maintain her life. Afterward, she also developed PTLD (Post-Transplant Lymphoproliferative Disease) and is recovering from that as well as still recovering from her TX.

We live near Pittsburgh, PA, and Mark is a sales agent for American Transport, a trucking company in Pittsburgh. He works at home.

I owe my sanity ;-) to Wanda and my gratitude for her foundation of this group and all of the new 'family' members I have acquired here.

Karen S. Durbin
68 Van Drive, Burgettstown, PA 15021-1402 USA
Phone 1-724-947-5213
FAX 1-724-947-3097
Karen.tsmom@worldnet.att.net
ICQ 67804080

PULMONARY HYPERTENSION ASSOCIATION, INC.
http://www.priorityneighborhoods.com/phneighborhood/index.html

ORGAN DONATION INFORMATION
http://www.organdonor.gov

NOONAN SYNDROME SUPPORT GROUP WEB PAGE
http://www.noonansyndrome.org

Please see webpages above for more information...

The Noonan Syndrome Support Group, Inc. and any associated parties will not be held responsible for any actions readers take based on their interpretation of published or disseminated material. Please review medical treatment and decisions with your physician.