Debbie’s Story

I was diagnosed with lymphedema in 2011 after showing growing signs of the disease since 2000. I have it in both legs and learned that my paternal great grandmother had it as well in both legs. Since being diagnosed in 2011 my legs have grown larger. I had to stop working in 2013. I have been forced to apply for disability which is a major challenge because the disability office just keeps passing it off as water retention or a little swelling here and there. My daily activities are limited as well. I was a very active person that loved to hike, fish, walk, horse back ride, and work in my yard just to name a few. With the major restrictions that have come about over the past two years especially, i have developed major depression as well as being very resistant in leaving home because of shame of how i look. It has affected my husband and children too. They are trying to adjust to the changes in me that has made me reject several activities that i once participated in without question. It has and is a major transition that has affected our family as a whole. When i got diagnosed i was told several times by medical staff that they had to research before treating me because not too many are educated well on this condition. I now see a PT/Lymphedema specialist once a week for manual lymphatic drainage message. I wear a type of compression garment daily on both legs and i see my PCP every 3 months for regular follow up. My PT has been trying for months to get me a home pump but has been running into insurance issues. I would benefit greatly from the pump. Daily use of the pump will help reduce some pain and swelling. I understand that there is not a cure, but I know that every little bit would help at this point. Thank you!