I have had primary bilateral lymphedema for 30 years, since I first noticed swelling in my left foot when I was 13 years old. I was diagnosed 10 years later, after stumbling upon information on the internet that led me to consult with a lymphedema therapist.
Fortunately, I have maintained swelling reduction through the daily use of compression garments, a pneumatic pump, lymphatic massage, and various other supplies and equipment.
All this time, insurance has covered very little of the medically necessary equipment and services. I have spent tens of thousands of dollars out of pocket to cover what insurance has not.
The pantyhose compression stockings that I wear every waking hour have been my most valuable tool in maintaining my health and quality of life. I cannot take a pill for lymphedema. Compression stockings are my lymphedema drugs.
Without these stockings, I can’t stand for more than three minutes before my legs start swelling and aching. My skin turns red and it feels like I’ve got pins and needles under my skin. Over a matter of hours, the pain becomes excruciating.
Without these stockings, my legs would swell to the point that no definition would be seen in my legs, I would lose mobility in my joints and I would be extremely susceptible to a life-threatening infection called cellulitis.
Despite the medical and cost benefits of these compression stockings, insurance covers less than half the number of stockings that are medically necessary for me on an annual basis.
Many patients with lymphedema are not able, as I am, to pay for their compression stockings. Even the idea of paying for one pair of stockings can be out of reach, let alone all of the equipment, supplies and massage. This leads them to suffer needlessly.
They need help not only this year, but for the rest of their lives. The lymphedema is not going away and neither will its annual financial burden.
As with any other health condition, lymphedema sufferers would only ask for fair treatment and consideration of our critical health needs so they may live full and productive lives.
