Tuesday, November 18, 2008

Letter to Congress Regarding Lupus Research...

Here is the requested info from the LFA:
"Thursday, November 20, 2008 will mark an unfortunate anniversary. On that date, it will be 50 years since the U.S. Food and Drug Administration (FDA) last approved a drug specifically to treat lupus.
A half century is a long time to be waiting for safer and more effective treatments for a disease that affects an estimated 1.5 million Americans and at least five million people worldwide.
We need to let Members of Congress know that they must provide more funds to conduct the basic research that pharmaceutical and biotechnology companies need to develop new treatments for lupus. At the same time, we want to express our collective gratitude to the hundreds of researchers and industry executives who have been working tirelessly for many years to bring scientific discoveries from the bench to the bedside.
So what does 50 years without a new lupus drug mean to you?
No one is more qualified to speak out about the need for better treatments than individuals with lupus who have no option but to keep using the old drugs that were approved for lupus when Dwight Eisenhower was still president and can have side effects worse than the primary disease.
How can you help? Share your photo & story!

So here is the letter and photo I submitted:
My name is Shannon Strong. I was diagnosed with Systemic Lupus at the age of 18. It has been 13 years that I have lived with this disease. After trying many medications that did not work because they were not specifically designed to treat Lupus, or the flare-ups associated with it…I was put on Prednisone because it was the only thing that controlled all of the facets of my daily pain.
Since nothing else seemed to work, I have remained on Prednisone for 6 years. In those 6 years I have developed Ulcerative Colitis, Type II Diabetes, and Osteoporosis. I suffered a broken back 4 years ago and underwent Kyphoplasty surgery to heal the shattered L4 vertebra I received from simply walking my dogs one morning.
50 years without a new drug to specifically treat Lupus means many more visits to Doctors that have their hands tied in prescribing medications to me because there are currently none that can help my situation that will not be the demise of my overall health eventually. 50 years without a new drug for Lupus means that I may not be alive to see my 15 month old son graduate high school, get married, and have babies of his own someday. I look at his beautiful, innocent little face every single day and wonder if I will be with him long enough for him to learn all of the beautiful things about life that I want to teach him. I wonder if he will have enough time with me that in case something does happen in the future-that he will really truly know me, and everything I believe in and support-and will that be enough for him to emulate the kind of life I want him to live, and be the kind of person I pray for him to be? Will it be enough time with me that he will always carry a part of me with him in his heart if he had to live without Mommy? Nobody should have to ask themselves these questions everyday of their life.
I am forever in support, and grateful for all of the current technological advancements and to the researchers and executives who are working diligently to create a medication that is safe and effective in the treatment of Lupus. Their hard work and focus on these new medical studies and treatments for Lupus is astounding, and more appreciated than words can describe. I am by far not the only person that asks themselves these questions daily, and I will certainly not be the last. I ask humbly, please provide increased funds for research to find ways to develop safer and more effective targeted therapies for lupus. Nobody can afford to wait another 50 years.

You can click the link to the far Right of my page to read more about this letter and specifically about where this letter will go, and who it will help. The link is Lupus Blog-LFA.


Kacey R. said...

Thanks for stopping by my blog and sharing so much about yourself in yours. I've learned alot from my visit tonight, so thank you for that too! :o)

You come by and blog stalk me anytime you like my dear. I'll be back to yours as well. Your sweet little Brayden just melts my heart he's so darn precious! I LOVE the photos that Rob Sigler took as well. I used to really be in to black & white photos - and still am - but I LOVE color for for the littles.

AND you added my button? You are too nice. :o)

Katy said...

Those pics on your blog are darling! I haven't had a chance to read anything yet, but will.

I found you over at Chronicles of a Mommy on her comments. I'll visit again,,,,,maybe later today.

You can stalk me to if you want! Love stalkers. You can see the progression of my master bedroom and many more photos and such.