Photo: Mary Anne Stull with first grandchild, Taryn. All photos used with the permission of John and Mary Anne Stull.

LE&RN recently received an inspiring note from long-term supporters, John and Mary Anne Stull. They kindly agreed to let us share their story, written by John, here.

Below are the before and current status of Mary Anne's legs. Ms. Kathy Bates, LE&RN, and the stories of determination from those living with LE fortified our commitment to deny LE a free pass.

At this time when LE&RN is engaging with Congress, we have a word for our legislature: Mary Anne and I do not feel that “LE” robbed her of dignity, self-esteem, health, and respect. Rather, it was the many doctors who were unimpressed with the condition; the ones who said, "I’ve never seen this," and made no effort to find out; the ones who said, “you have a bad lymph system," and offered nothing; and the ones who said, "you are just obese and need to control your diet."

For the past five years, Mary Anne has been in and out of the hospital for colon cancer, breast cancer, and heart failure. The care she received for these conditions was impressive. Yet no one took an interest in LE.

What we ask of the medical community is simple: Stop judging what you do not know, open your minds and hearts, find the facts, and do something.

LE is not a benign condition. A 15-year-old has more options and empathy for a pimple than a woman who cannot walk or wear shoes because of LE.

We are grateful to all those who have shared their battles with LE and we remain committed to fighting this disease.