From Kati: A little on lymphedema

Lymphedema isn't that bad. But it could be better. This is the limbo I find myself in daily, as I mummify my leg in 50 feet of bandages for nightly compression, or tug on my thick stocking with its itchy silicone band and stiff fabric that pinches behind the knee. While going through the daily trials of living with an incurable but unthreatening condition, I take it for granted that I have a first-class support team. My family and friends have stepped up to share every burden short of absorbing my excess lymphatic fluid, and their love makes it possible for me to live almost as I would would without lymphedema. 

Not everyone is so fortunate. Many lymphedema sufferers struggle to obtain proper treatment or coverage for therapy and garments. Unlike me, many people with lymphedema are barely able to walk and have a hard time holding full-time positions, exacerbating lymphedema's financial hardships. Additionally, lymphedema can affect any part of the body. From personal experience, I know how our disfiguring medical condition wears down self-esteem. My frustration with my swollen leg pales beside the emotional and social costs of individuals whose condition manifests in their hands, genitalia, or face. 

For all of us affected by lymphedema, there is the unending anger at questions that seem so simple and yet go unanswered. In this age of particle accelerators and speed-of-light cameras, when we can see inside of atoms and name all of their parts, no one is able to look inside of us and tell us what is wrong with our bodies. The explanations for lymphedema remain mired in 19th-century science. But we know the 21st century has a cure. 

My older sister Marissa has stepped up to lead the charge by organizing a run to generate funds and promote awareness of lymphedema. Please join my family in raising money to flush the stagnant backwaters of medical knowledge and get the lymph flowing through thousands of bodies. My lymphedema isn't that bad, but with your help, we can end all lymphedema forever.