Dr. Colins and Dr. Madara:
I am writing in regards to the hope that the NIH will establish a National Commission on Lymphatic Diseases as proposed in a FY2022 appropriations bill. I am sharing my story as well because I have lymphedema.
After numerous visits to the doctor to pinpoint the cause of the swelling of my lower left leg and foot, I was finally diagnosed with lymphedema in 2018. That same year I began treatment to get the lymphedema under control in both of my legs. My left foot and leg were the focus of my occupational therapist's care. I visited her twice a week so she could check to see if there was any reduction in the swelling. I would hobble about with my left foot in a post-op boot, my left leg swaddled in gauze and bulky compression bandages. Sometimes my co-workers gawked at me because it looked as if I had broken my leg. For seven weeks she wrapped my leg and foot with compression bandages, did manual lymphatic drainage massage, and took measurements to monitor changes in the swelling. The day finally came when I "graduated" to wearing a custom-made garment for my left leg and an off-the-shelf stocking for my right. Wearing the custom garment took
some getting used to and I developed blisters. I had to let them heal on their own without any intervention on my part. I had learned a new lesson--take care of your skin lest you get an infection.
Over the course of the past three years I've grown accustom to wearing my compression garments and going to my six month check-ups to get refitted for them. I've also been asked if my lymphedema will get better or go away and I tell the person, no, I have to keep the lymphedema under control for the rest of my life and that there is no cure---yet.
Which brings me back to the reason why I am writing and shared my story. There needs to be more research on lymphedema and lymphatic diseases, research that can lead to better treatments and cures for them. Perhaps there will be a day when people do not have to wear compression garments for their entire lives or fear that they will develop a lymphatic disease after surgery or an infection. Modern scientific research has bestowed humankind with treatments and cures
for many ailments that once sickened, crippled, and killed people over the centuries. It is time that lymphedema and lymphatic diseases get the research attention they are due so that millions do not have to suffer from them.
I thank you for your time.
LE&RN Supporting Member