Jeanne’s Story

I have been diagnosed with primary bilateral lymphedema tarda in both legs. I have had several infections and been on many antibiotics since I was first diagnosed on January 3, 2013. I have to wear compression socks on both legs many hours of each day. I have to make sure my legs have healthy skin so I put lotion on daily. I have just recently been outside and was bitten or stung by something on my left leg and the part of the leg with lymphedema is all red not just the places where I was bitten or stung. I have never had such an overwhelming reaction to a bug biting or stinging. The spot may have swollen and gotten red and then went away. You have no idea how surprised I was to the reaction I got on my left leg. You can’t imagine how much something like that itches, I would compare it getting to hundreds of mosquitos all at the same time. But it was only two places that were bitten or stung. This is an orphan issue that definitely needs to be brought out to everyone. It needs support from the government to help with major league research needed to help understand what is going on and how best to get help. I have tried to read the medical version of the condition and I am not a doctor just a regular person and I would like to read in laymans terms what is going on with my lymphedema and what I can expect in the future. The very recent past has not been pleasant and I would like to know what the future holds for myself and those who have lymphedema and those who will develop in the future.