The
lymphedema documentary project is slowly but surely coming to life. I spoke yesterday with Suzie Burden, an amazing woman in Indiana who has primary lymphedema like me, has had symptoms since birth, like me, and is also completely kickass. Like me! It seems to come with the territory. We discussed many things, one that Sam Donaldson apparently has secondary lymphedema from lymphoma surgery, so I plan to contact him and attach him to the project. We also discussed various treatments Suzie has tried or is aware of, one being cold laser therapy, which was approved by the FDA for cosmetic purposes but not for lymphedema (and doesn't that take the cake. Our day will come!). Cold laser therapy is completely safe, non invasive and has proven highly effective in breaking up fibrous connective tissue in conjunction with a manual lymph drainage regimen. The accumulation of connective tissue over time (the body's response to swollen areas over time is to fill them with fibrous spongy tissue that is difficult to break down) is the main obstacle in a lymphedema patient's effective treatment. If cold laser therapy breaks it down, that's our golden ticket.
We discussed many things, one the emotional journey that all people with lymphedema seem to travel, including bouts of depression. I've met four or five people now with lymphedema since the start of this project over the summer, and there is a remarkable similarity not only in the depths to which it has sunk each of us, but also in how upbeat and powerful we all are now, after long periods of futility and isolation. It's a relatively unknown condition that effects a lot of people, significantly impairs quality of life, can be quite dangerous, changes the appearance of the body, and is generally damn depressing. But this woman Suzie teaches water aerobics - perfect for lymphedema, because the body is effectively weightless in the water. She also agreed to partner with me on the project. Woohoo! We have team!
We also agreed that this documentary could be one hell of an inspiration for people. The first goal is producing a trailor with high production value, telling a moving story in a few minutes. Something that could air on Oprah or some show like that, or perhaps even in a movie theater as a non-profit ad. Then we'll use that to raise money for the full-length documentary. Within 10 years, lymphedema will not only be a household word (or at least a word all doctors know for god's sake), but it will be covered by insurance and treatment will be considered a given, not something you have to fight for every time.
Viva la resistance!
Wrote an article for IBM Developerworks on a small PHP framework I designed called Butterfly, because it facilitates the transformation of XML via chains of XSLT stylesheets, and was inspired by the Apache Cocoon project.
