Monday, November 9, 2009

LA Lupus Awareness aka LALA

After my trip to Washington D.C. and Capitol Hill to advocate for Lupus I was excited to continue promoting and sharing Lupus Awareness with everyone I meet. I learned that I can be somewhat shameless and still remain true to who I am by using Facebook and Twitter during a "beauty contest" when I was asking friends and followers for votes in the Purple Lab NYC "Huge Lips, Skinny Hips" Kiss and Tell promotional campaign. I won one of the "Most Viral" titles
and used that win--and Purple Lab's idea of women are "Multi-tasking Mavens"--as inspiration for my Halloween costume and LALA, my name for LA Lupus Awareness. I realized that I could use that same shamelessness or chutzpah to benefit Lupus Awareness and Research.


Like the "Kiss and Tell" contest from Purple Lab, I wanted to create HUGE awareness for Lupus. After I recovered (when you have Lupus--at least with me--my body pays a price when I travel across the country, go to meetings with members of Congress on Capitol Hill and travel home again; the three days after my return I refer to as "recoup and regroup") from my trip to the nation's capitol, I began to think about creating a plan for my idea. First, I wanted to learn the latest Lupus news from the medical professionals. I went to the annual Lupus Patient Symposium sponsored by Lupus LA held at UCLA Medical Center to learn more about the latest research, current treatments and innovative therapies. I think it is important for Lupus patients to always keep themselves educated about current Lupus news and information. The annual symposium is a great way to stay informed and to connect with other Lupus patients. Connecting with other Lupus patients is one of the best ways to find comfort and support within our community. Whether attending a patient symposium or a local support group I have found the best support comes from someone who has been there and has gone through the same or similar circumstances. For me, the best thing about going to the Lupus Patient Symposium wasn't the incredible news about the clinical trial progress of one of the first new drugs for Lupus patients in over 50 years (Benlysta; since the day of the symposium Benlysta has had positive results in Phase 3 and is moving on to FDA approval). The best thing was that it was there, on a Saturday morning in Westwood, that I finally met Carmen--a friend and fellow "Lupie"-- in person. Carmen is one of the first Lupus patients that I connected with on Facebook and it was great to actually hug her instead of sending her a virtual one.


Armed with the education of a one-day patient symposium I was determined to continue to raise Lupus Awareness throughout and within Los Angeles. I planned on doing what I could do to raise Lupus Awareness between the Shopping Day on Rodeo Drive and the annual Hollywood Bag Ladies Luncheon. I created a video for YouTube on this year's Shopping Day on Rodeo Drive.


The YouTube video wasn't enough--I wanted to do more. I was determined to do more for Lupus but unsure of how to go about it. A bit later, as I was cleaning out my purse, I saw the flyer for the Lupus clinical trial that I heard about at the Patient Symposium. This clinical trial is studying links between Lupus and increased risk for CVD (Heart Disease) so I called the number and made my appointment to join in my first clinical trial. Though I have been a Lupus patient for over 26 years, I had never participated in a clinical trial before. I had little concern about the process, since Carmen had told me how easy UCLA had made it. You go in for your appointment, talk to the doctor, have your labs done and then your neck x-rayed. Carmen was right. The process was simple. After answering a few questions to verify my eligibility, I was given an appointment and place in the study. Once I arrived at UCLA Rheumatology Department, the clinical trial was easy. The patient intake--answering questions about my Lupus diagnosis and presence of Lupus activity--took less than an hour. Next, I was taken to the lab and I had my blood drawn; about 10 tubes were taken in addition to the two tubes of blood for a genetic study of Lupus patients. After the blood was drawn, I had to go to the Ultrasound Center for the ultrasound of the artery in my neck. The ultrasound of the artery in my neck will show the presence (or hopefully the absence) of plaque in my arteries and serve as a guideline for my propensity towards heart disease as a Lupus patient. The Ultrasound Center was located in a different part of the UCLA campus , so I moved my car and parked in the underground parking lot. I walked toward the elevator to go to the Ultrasound Center and that is when I took an elevator with Stevie Wonder. He was with his driver/companion and was whistling in the elevator.

That is when I said "Mr. Wonder, I enjoy your work."



He smiled extended his hand and said "What's your name?"



I replied "Amanda, I am LA Lupus Lady" as I smiled at my own response.



The elevator doors opened and Stevie said "Nice meeting you, Lady."



With those words, I got off the elevator and found the Ultrasound Center. I went inside and instead of my name I gave the receptionist my medical reference number for the clinical trial, and the receptionist told me that I would be called by the name of the study and not my name when the technician was ready for me. A few minutes later I was called. After verifying that I was there for the Lupus study, I sat down on the table in the room and then I laid back as the technician placed some gel on the right side of my neck and I turned away from her she rubbed the ultrasound wand over my neck slowly and repeatedly. The same thing happened on the left side of my neck and then I was done. A short drive to UCLA, a few questions about my Lupus, a blood draw and a neck massage all in the name of Lupus Research. If you want to participate in a clinical trial for Lupus, you should visit the website http://www.lupustrials.org/ for all the information you will need to get started.

video

I would like to thank Karen Robinovitz and everyone at Purple Lab NYC for not only inspiring a Halloween costume but the idea for "LALA" as well. ~ More on my LALA activities aka LA Lupus Awareness coming very soon. If you can't wait for the blog update, then follow me on Twitter via @LALupusLady.

No comments: