From Marissa: Going Long for Love + Lymphedema

I wish I knew more about medicine and the human body.

Sometimes, I wish I was a physical therapist or a doctor.  That I had gone to medical school.  Or trained in a field that would allow me to advocate for my sister and other individuals with lymphedema in real, tangible ways.

Though I do not have those skills, I do know how to write and I do know how to run.  So I will run a 50 kilometer (31.07 mile) ultramarathon to raise money for medical research of the health condition lymphedema, and record the journey along the way on this blog.  I am excited (and a little scared) about participating in The Grizzly Peak Trail 50k on April 7, 2013.  

My little sister Kati, who is 22, has lymphedema.  

Lymphedema is a disorder that causes protein rich lymphatic fluid to accumulate in interstitial tissue. The result is swelling, usually in a person's arms and/or legs, though sometimes in other body parts.  There are many potential causes, ranging from hereditary with no known catalyst (primary) to lymph damage through radiation or trauma (secondary).  Individuals with lymphedema often face constant physical discomfort, emotional distress, expensive and time-consuming medical maintenance, risk for serious skin infection, and the need to modify or limit activities they love (like, for Kati, hiking, running and sitting for extended periods of time to read).  Click here to learn more about lymphedema.  

Before my sister began to develop symptoms, approximately three years ago, I'd never heard of lymphedema.  Over the past couple of years, as Kati has seen some of the nation's leading specialists, I have been surprised and disappointed about how little is known about the disorder, and the lymph system in general.  Despite the power of modern medicine, there is no cure.  The status quo is lifelong maintenance.  It is an underfunded field in medical research.   On the bright side, there is something we can do.  We can raise awareness and money to fund research to find effective treatments and—I deeply hope—a cure.  

The Lymphatic Research Foundation is a non-profit 501(c)(3) organization devoted to medical research for lymphatic diseases.  I am choosing to designate funds toward The LRF because I believe that making progress in medical research for effective treatments and cures is a key to helping patients of lymphedema, like Kati, in the long run. 

Please join me (and my close friend Christine who will make this run with me) in taking steps toward better, more effective treatments and a cure for lymphedema.  Your financial and emotional support are deeply appreciated.  If you would like to make a donation, please visit our fundraising site here.

With love,

Marissa

P.S. For those of you in the Bay Area, we will also be hosting a fun awareness-oriented hike in the Oakland Hills on Saturday, April 6, 2013 (the day before the race).  More information to come.  Please save the date!

Course elevations for the Grizzly Peak Trail... Whoo-wee!