Archive for June 6th, 2011

Posted on June 6, 2011 - by Nurse Virginia

A GENETIC CONDITION – THE TRAGEDY OF LIPEDEMA/LIPODEMA

(PART II)

Joyce’s story: Joyce never knew her paternal grandmother, but she remembered a picture of her Dad when he was about 10 standing next to her. There her grandma sat, a thin woman with almost sunken eyes yet the very thick legs and ankles showing from under her dress. Joyce did remember her grandmother’s sister Clara. Aunt Clara was a short very happy smiling woman. But she also remembered as a child staring at Aunt Clara’s big legs.

As a child, Joyce certainly never thought that would happen to her and she never remembered hearing anyone in the family talking about Aunt Clara’s big legs. Joyce and her sister grew up much closer to her mother’s relatives and only saw her father’s side about once a year. So had Lipedema been an issue in her mother’s family it would certainly have been discussed. But since it was “the other side” it was just a curiosity and soon forgotten.

Even though Lipedema did appear in her father’s family, it didn’t affect her father. Her Dad’s legs were in fact on the thin side. Joyce says her family attributed his thin legs it to the fact that he had always moved so fast. Even in old age it had been hard to keep up with her Dad anywhere they went. Of course by the time her Dad was old, Joyce and her sister Connie were trying to keep up with their Dad on “Aunt Clara’s legs.”

Over the years Joyce and Connie were so involved with raising families that as their legs got larger and larger they thought they had a weight problem. They never connected it with their Aunt Clara. Oh, they took their kids to the beach swimming but neither of them had been in a swimming suit for years by then. The sisters were just happy for the turn in fashion to pants and pant suits for women.

Lipedema/Lipodema so misunderstood, even the professionals don’t know what it is.

Then the day came when Connie went to her doctor for painful arthritis in her knee. When the doctor took a look at her legs, she immediately stated that Connie had Lymphedema and needed to see an Occupational Therapist for drainage techniques. Going to therapy was a painful and humiliating experience for Connie. She had to wear shorts for the therapy, and after the therapist worked to drain the fluid with massage, Connie was expected to get the very small tight Ted Hose on.

One day Connie arrived for therapy and found that the therapist wasn’t in and when she met the replacement. The first words the therapist said while looking at her legs, were “You don’t have Lymphedema you have Lipedema, massage isn’t going to work for you.”

Virginia Garberding, R.N.

Author: Please Get To Know Me – Aging with Dignity and Relevance

www.pleasegettoknowme.com