I am 64 years old and was born with Milroy’s Disease as was my mother, grandmother and an uncle.
Being surrounded by others with the same condition led me to believe for my first five or six years that this was the “norm”. I was basically told, “You were born with it, you’ll die with it and in the meantime learn how to live with it…and always wear ‘sensible shoes’.”
I was raised in an era where children did as they were told and accepted whatever their parents said as “law”. No effort was ever made in my early years to seek any kind of medical help. It didn’t exist in the fifties. I didn’t suffer much emotionally during my early years because I was never really teased or bullied by anyone.
As I approached my twenties the fashion police finally relented and permitted pants suits for women and I could now hide in plain sight with my secret. In my mid thirty’s my family doctor sent me to a rehab center to be fitted for compression stockings. They were the panty hose from hell. There was no insurance coverage available and at $135.00 a pair I finally gave up after about a year. Because of the discomfort of getting them on, constant laundering and the continual bunching at the ankle and knee I gave up. The cure was worse than the disease. With Milroy’s you are always back at square one in the morning.
I have had 64 years of “accepting” and have had a good and productive life, despite my nasty little mutated gene. I will never know if early treatment would have made any difference in the course my life took but I know that other people with lymphedema deserve a chance to try to return their lives to normal with the treatments now available.
