Woodland Park, NJ
Hi. I have primary hereditary lymphedema.
I've always been heavy and use to think that my legs were just fat. At 12 years old, my parents sent me a summer camp for overweight children. It was then that I noticed that I'm the only one with fat legs. I was ridiculed by the other kids. At that point, I stopped wearing shorts or going swimming. I developed such a low self-esteem and shame that as a teen and young man it affected my ability to have relationships with women. I missed out on many things in life because of the shame I felt from this disease.
As I got older, doctors would put me on diuretics thinking this would relieve the swelling. It did not. At the point that my feet started to get puffy and the internet was available, I discovered on my own that I had primary lymphedema. I would say that I was lucky as I never got to the point that I would ooze fluid or that my "rolls" would get so big that they would fold over themselves.
I found a doctor (there is only one in northern NJ) and with her help started lymphedema treatment plus wearing custom compression garments. I started with knee high garments but now wear thigh-high garments usually six days a week and the knee-high one day a week.
Now I'm 60 years old and I'll never be cured, I'll never be normal. But I managed to get by with this disease.