Becky’s Story

I have been sick all my life with primary lymphedema, symptomatic since age 10, and I was only recently diagnosed at age 50. Doctors are not educated properly on lymphedema. When they see a patient with edema, they automatically try to blame it on the heart, lungs, liver, kidneys…everything but the lymph system. I know many people never get proper treatment during their lifetime and are only properly diagnosed through autopsy. On the death certificate of my great aunt, the cause of death is listed as “drowned in own bodily fluid.” What can we do to help get doctors educated properly? I’ve fought with this all my life, lost jobs, friendships and spouses, and recently almost lost my home while trying to qualify for disability. One doctor actually told me I was depressed and that’s why my body was swelling (reasoning that depression can do terrible things to the human body). This was an educated, board-certified physician! At one point I actually started to believe that maybe I was a hypochondriac and had talked my body into swelling up, and that I was just lazy and that’s why I needed to spend so much time in bed and got so tired, so easily. There are so many people out there suffering, and so many doctors who are content to address the symptoms one-by-one with improper care, which leads to worsening symptoms. I wish that an educational pamphlet could be sent to every physician, medical center, nursing home and specialist. Something to get them excited about an illness that goes undiagnosed. There were doctors in my past that genuinely wanted to diagnose me, but they were never properly educated about lymphedema. I got lucky and was finally sent to a man who made it his mission to educate himself on the subject and instantly knew what was wrong with me. Thank you Dr. David G. Draughn, MD, FACS, RVT, RPVI. He saved my life!