Image by tibchris via FlickrThe Internet has been a great tool in bringing people together. Recently I found my childhood friend, Julie, on the Internet and we hooked up on Facebook. While catching up with each other, she informed me that her 17-year-old daughter, Kelly, has been suffering with a disease called Scleroderma. Since I had never heard of it, she graciously spent some time chatting with me.
According to Julie, "Kelly was diagnosed with it at the age of 17. She was told "we don't know what causes it and don't know how to cure it. So you may just as well sit back and wait to die." Doctors also told us that as long as it affects the outer skin layer all is well, but if it affects the major organs than it is life threatening. And for Kelly, it has affected her organs in the last few years."
Julie mentioned that there is a Scleroderma Research and Awareness Act now on the docket of Congress. The Scleroderma Foundation has requested that an act be passed to approve funds for research on Scleroderma. If this act is passed, people like Julie's daughter can possibly get the help they so badly need. Too many doctors are still unaware of this disease and not enough research has been done in order to help people like Kelly. Julie said, "If we can make our congressmen aware of this act then we should have a better chance on getting it passed."
"It's especially hard when you have no clue if your daughter will last a month, a year or ten years. And for all of the other mothers out there whose children are just being diagnosed, I want them to have a better fighting chance than I believe my daughter received. And I want them never, ever to hear the words "We don't know what causes it, don't know how to cure it, so sit back and wait to die." To a child of 17, that is nothing more than a death sentence that never gets out of their head."
"Kelly wants a normal life, to have children and all. But so far doctors have no clue if she will be able to use her organs; due to too much collagen her organs do not expand and contract normally. Her stomach has been affected the most and there has never been a successful stomach transplant ever done."
"The reason I am reaching out to you on this is because I know you have a large audience that reads your work and I am hoping for all to be enlightened on this disease and to ask for help on getting this act passed."
I asked Julie "How has Kelly been through all this? She sounds like a very brave young girl."
Julie told me, "She has her good days and her bad days. And yes, she is brave but also scared because she does not always understand what is happening. She wants for the two of us to go to a conference in Boston that is supposed to be directed at educating those afflicted with Scleroderma. Since she does not always understand what they are saying she wants me to go with her if we can pull it off financially."
And so my good readers,
HELP PASS THE “SCLERODERMA RESEARCH AND AWARENESS ACT”