Dear Editor,
My 12 year old daughter has recently been diagnosed with Lymphedema Praecox or Meige Disease. Up until the summer of 2020 I had no idea such a disease existed. As her mom, my hope is to share this story as a voice for her to have a better quality of life a better understanding of what causes this physically altering disease and most importantly to raise awareness of the affects of disease and the lack research towards a real solution not limited to treatment of the symptoms that come with Lymphedema. Her symptoms begun shortly after starting her first menstrual cycle and have progressively become worse over time. The swelling has been identified in both legs, both arms and her face. Predominantly below the knees and into her feet/ toes. The swelling at times will be so enlarged that it prevents her from being able to bend her feet in a necessary way to walk or put on shoes. Her hands will be so tightly swollen that holding a pencil in school is a challenge in its self. These factors alone make this disease debilitating. I can’t even put words clearly enough together to describe the mental affects this has had on her and myself. She’s given up on participating in sports with her peers because of the inability to keep up with them. She looks at herself in the mirror and she frowns at what she sees. As a mother this is heart wrenching. The current treatment for Lymphedema as everyone knows is manual drainage massages, compression garments, and compression everything machines, you name it. So far, twice each week she sees a LANA certified therapist for her drainage massages, on the nights she doesn’t have her appointments we use the compression a machine from Tactile Medical supply—for one hour a day we do the core and lower body compression program. I also have a full time job and a 4 year old daughter so as anyone can imagine making this work day to day has been a challenge. The compression and drainage massages have made a significant difference but there’s more to the picture when dealing with Lymphedema. I am worried about her long term health. I’ve noticed the swelling has caused skeletal changes to her body which over time could lead to other significant health issues. She’s also had some imaging done to track the flow of fluid and we are currently awaiting the results from her genetic test to hopefully have a firm diagnoses on if this is hereditary or something else could possibly be causing her Lymphatic System to not function correctly. When dealing with the insurance side of this the coverage for garments and manual drainage sessions has been a challenge. Our current insurance provider would only cover 12 therapy sessions a year and would bill this as a copay as opposed to an actual treatment plan. I’ve reached out to a couple of surgeons to consult for options. So far I’ve been told insurance will likely not see this as medically necessary. The roadmap for anyone dealing with Lymphedema is not easy and if left unmanaged the ability to treat with compression or drainage massages decreases. I speak for my daughter who’s Lymphedema story has just begun and I hope for her future self there becomes enough bleeding hearts to continue to push for more knowledge more research and more options for the families affected by Lymphedema.
Tiffany Mixon
Cashion, OK