Janet’s Story

My story begins with my first pregnancy about 32 years ago. While I was pregnant I began to have significant swelling in my left foot. It ached and felt tight. I was told this was common during pregnancy and would be better after the delivery. The swelling in my left foot never went down and over the years continued to get worse and more painful. I would frequently develop small infections on my left leg and foot. Shoes became more and more of a problem as my feet were different sizes.  

I would bring this up with my doctor, pointing out that only one foot and leg were swollen. Only one foot and leg were painful. I was met with condescension and basically patted on the head and told to put my foot up. I switched doctors more times than I care to count trying to find a doctor who would listen and treat me with respect. I could put my foot up 24/7 and not make a difference in the size of my foot. How much can you accomplish with your foot elevated? At the end of my life I would like to leave a better legacy than ‘she put her foot up.’ 

I have discovered that doctors are given very little training in the lymphatic system. Clearly we need more awareness among medical professionals. Primary lymphedema which is what I have affects 1 in 6000. So, the odds are many doctors don’t ever have a patient with this disease. Secondary lymphedema affects approximately 1 in 40 million people worldwide. Secondary lymphedema is often a result of cancer treatment. So, this could be your mother, your sister, your niece, your aunt, your grandma if they have lymph nodes removed during their treatment for breast cancer. We need to bring more awareness worldwide so people can immediately begin treatment when they develop symptoms. The sooner treatment is begun the better the outcome. At this time there is no cure, but it can be controlled with the proper treatment and compression garments. 

Back to my own story, about seven years ago I began having some skin problems including losing my hair. I went to a dermatologist and she sent me to consult with a geneticist as I also have a skin condition I was born with and she wanted to make sure there wasn’t something else going on. I went to the geneticist well prepared with a family history etc. I also for some reason took a picture of my feet to show her because normally I am wearing shoes and long pants and the difference in my leg and foot are not visible. It turns out that photo was my golden ticket. She knew immediately what was wrong with me. She knew I had lymphedema! Honestly, it was such a relief to have a diagnosis. Over the years I alternated between anger, resignation, thinking I was crazy and depression. Yes, I went down that dark road no one should have to travel. This affected everything in my life. I gained weight, lost my motivation for everything, had difficulty being the parent I wanted to be, lost friendships and faith in the people who were supposed to be helping me. I began to work my way back, lost quite a bit of weight but couldn’t do many of the things I used to do including being on my feet all day as a teacher. 

The good news is the geneticist sent me to a qualified lymphedema therapist. This was life changing. I learned how to wrap my leg in compression bandages at night. I learned about lymphatic massage and how to do this as part of my treatment. I ordered compression garments made just for me. My leg went down in size over the course of this three week treatment and with continuing care I can hopefully keep it at this size. It will never be the same size as my right leg since it took 25 years for me to get treatment and the sooner treatment is begun the better the outcome. I lost twenty pounds during the treatment because wearing the compression felt so much better I began walking again. Without this treatment I don’t know where I would be. It really is a medical necessity for any quality of life. 

The symptoms of lymphedema are abnormal swelling, a feeling of heaviness or tightness in arms or legs, a restricted range of motion, aching or discomfort, recurring infections, and hardening or thickening of the skin (fibrosis). All of these symptoms continue to get worse, faster, the longer a person goes without treatment. So, if we make treatment available sooner for people the less complications they will have for the rest of their life. This will save money over their lifetime. Many people end up in the hospital from complications related to infections. I wear my compression garments daily and the quality of my life has improved greatly. My insurance covers two of the full leg stockings and two of the toe caps yearly. Since I wear these daily they need to be washed frequently. I am very careful how I wash them to preserve the quality of the garment. Before the year is over they begin to lose some of their elasticity and are constantly falling down. This becomes an issue if I have any distance to walk and have to keep stopping to pull up my stocking.  

Please support the Lymphedema Treatment Act. We need increased awareness, research, and coverage. I didn’t even get into the way I have been treated by the everyday people I meet in my life because for me first and foremost we need more awareness in the medical profession itself. That being said increased understanding and compassion in general in this world would go a long way. If people understood what this disease was perhaps they would find it easier to exhibit these characteristics.