57 year old female with bilateral primary lymphedema Authored by C.J.Y.
I am a 57 yr. old female with primary lymphedema (le)bilateral, lower extremities. I believe I have had it at least 20 years, but diagnosis was only 10-12 yrs ago. My left leg is quite a bit worse than my right, and both are becoming worse as time passes. The skin has deteriorated terribly, with blistering, ulcerations, weeping, various kinds of infections (including staph), hardening in places, discoloration, scaling, fissures, some numbness in places, and assorted other more minor manifestations. There is also a constant battle with yeast infections where the skin at my ankles overlaps itself.
I have read the other chronicles at this site and am thrilled to hear of so much success with bandaging, compression machines and other remedies. Like some other writers I live alone and can't apply bandages to myself (as soon as you move they fall down, as others have testified). I also have a snazzy compression machine and two sleeves that I can't use alone. I am unable to bend enough to get the sleeves on my legs, and my legs tend to sweat so much the rubberized fabric of the sleeves sticks to my legs and then I can't get them off! I haven't used the machine for several years as my knees are too swollen now.
Like almost all the rest of you, getting insurance coverage for the le has been a real struggle. As one writer commented, they are willing to pay to cut your legs off, but not willing to pay to keep them! Some have had successes though and every step gained could ultimately help all of us.
What I didn't see discussed much was the impact the le has on a person emotionally. I was a fairly healthy person, very lucky in many ways. I enjoyed a wide range of activities; sports, hiking, camping, yard work, sewing, cooking, my pets, attending festivals, shows, sightseeing, things we all do and rarely consider how blessed we are to be able to do. Now, I can't even wear a pair of shoes! My feet are grossly swollen. If I didn't sew I wouldn't have clothes to wear. Before this year is out I expect I will have to give up driving my car. Absolutely everything I want to do has to be considered carefully because of the le and the limitations it places on me, from the amount of space I need to keep from bumping into something with my 'tree-trunk' legs to the distance involved and whether I can go that far carrying the weight of my legs, and keep breathing and upright. I had to take an early disability retirement which has isolated me. When I do go out (less and less frequently) I hate being stared at, I hate seeing little kids hide behind mom or dad's legs. Mom and dad are no help, they're staring too. And, as others have written there is the frustration with the medical world. The 'Oh well, there's nothing I can do' attitude of the doctors and I've seen plenty of them, too. I've been hospitalized four times with swelling and infections, treated, and sent back home with no follow-up, no expectations, and no hope.
Lymphedema is a disorder that needs to be out in the open and there needs to be ongoing research in ALL aspects of it. We need greater awareness and certainly we need better coverage by insurance companies, Medicare, and state health coverage programs.
Thank you so much for giving me space to 'sound off' about my experiences with this disorder, and for the privilege of reading about fellow sufferers and their experiences and success. Since getting on the net in just the past few days this is the FIRST time I have been able to read about anyone else, in all these years, who could relate to my disorder, and I can see that I am not as alone as I thought. Am so grateful they took the time to write, too.