Dorothy’s Story

At 72 years on this earth, I never expected the resultant lymphedema to occur post surgery and as the result of talking an antiobiotic, Levaquin. I have secondary lymphedema.  Both legs and trunk of my body are involved. For the rest of my life I am required to deal with this nasty affliction; there is no cure, only very expensive maintenance measures.  For example, daily wraps must be worn 100% of the time, and cost between $600.00 and $1,000.00!!! They do wear out – lose their ability to control the excessive edema, so there are replacement costs to consider. This alone makes it very, very difficult to find the monies for the wraps, much less therapy. It is a deep concern that I should not have to deal with at my age. I struggle enough each day, trying to accept the things I can no longer accomplish, due to lymphedema – walking as I used to do, without use of walker and/or wheelchair; bending down; taking care of my lower legs and feet from a health standpoint, cutting my own toenails, having to make do with ill-fitting clothes because the cost of new clothing is financially prohibited, due in large part, to the cost of maintaining my lymphedema. Also always prevalent is the risk for infections on the affected areas, thus incurring further costly care, i.e. visits to wound centers. With financial help, those of us with lymphedema could afford assistance with our skin integrity. We can’t always reach the places that need fastidious cleansing. Entering and exiting private vehicles is usually extremely difficult, thus curtailing my social life by 85%, at least. Think about all this –then tell me why this bill should not be passed. I am certainly not the only one with this awful affliction. Passage of this bill would benefit so many people. Please -pass it in a timely manner.