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Click to read "I love my Caregivers" by Wanda

Ladies Always Wore Dresses

By Betty

My name is Betty and I’m sharing my story in the hope that others can learn from it. I was born 73 years ago with swelling of my left foot, leg, and part of the left side of my body. I  learned that this is congenital primary lymphedema; however in all of my years, I have never met anyone else with this condition.

As a child my Mother took me to many clinics but no one could provide any help. When I was 12 we went to the Mayo Clinic in Minnesota and all they could offer was for me to wrap my leg with large heavy rubber bandages.

When I was 15 we heard of a clinic in Texas where a doctor was working with lymph patients. When we went to him my leg and foot were huge with swelling. I had four operations on my leg in which tissue was removed from below my knee to my ankle and some from my foot. I also had many skin grafts. These surgeries did make it easier to find shoes that fit and, by wearing surgical stockings to hide the scars, I could wear dresses.

Being able to wear a dress, without having a swollen leg showing below the hemline, was important because at this time ladies, of any age, did not wear slacks. As you can see from the picture, at any time of day, or type of event, only a dress was appropriate.

The doctor who ran this clinic died so we never went back and that was the last time I was professionally treated for this condition. About 20 years ago I had a couple of bad infections in my leg and these were cleared up by using bread and milk poultices. I have never been treated with pumps or massage therapy.

As a child I swam, biked, ice skated, ran, and played baseball. As an adult I worked as a cashier, married, had two sons, and was always active. I’m still active and have pretty normal life (except for wearing slacks a lot).

I wish lymphedema were not such a “hidden disease” and I’m happy that it is beginning to get more attention with better treatments available. I believe you can learn to live with lymphedema and to still have a good life. Therefore, despite having been through some the hard times, I count my blessings everyday.

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


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