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Living with Lymphedema and Noonans Syndrome

By monkeygum

I was born with Noonans Syndrome which causes congenital heart problems. I have never been the healthiest person in the world. I've had four open heart surgeries up to the age of 13. When I was 14 I started to notice that my ankle was swelling up at a slow but noticeable rate. It would go away for a few months and then come back. About six months into it my ankles would get swollen all the time. My mom and I visited many doctors who couldn't figure out what was wrong.

They sent me to a vascular doctor who was very rude. He told me that if I don't wear my stocking for the rest of my life I will get big nasty sores and have to get my legs amputated. At the age of 15 that's not something you would want to hear. I got the stockings and hated them, cried over them, and tried to tear them up.

As I've gotten older (I'm 17 now) I've realized as mean as that doctor was, he was right. There would be times I would rebel the stockings and not wear them for a week at a time. I could see my ankles getting bigger with red spots on them. So now I have found 'cute' ways to wear my stockings. I wear mini skirts with knee socks that cover my stockings. In the past few months I got a pair of panty hose that I wear with shorts. It looks weird but it blends in better then stocking do.

I just want to tell everyone don't give up. I still cry in the dressing room when I can get those cute capres or those awesome board shorts. I look at what I do have, a loving mother and a great group of friends who like me for who I am, not what I wear. My family has been really supportive too.

Got a question or comment? Post in the 'Living With Lymphedema' forum. Share your stories in My Stories.
Category: Living well with Lymphedema


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