Why I Participate in the Patient-Powered Research Platform RAY
I was 15 years old when I was diagnosed with lupus, I was so sick; I remember my mom taking me to the doctor in a wheelchair, sitting me in front of the receptionist desk and begging for help. I recall making countless visits to our family doctor where I never got any real answers, until one day the doctor finally suggested I see a rheumatologist. We met several times and did a lot of blood work. Like many people battling this disease, I was given a strong dose of steroids, which of course brought on a whole new level of challenges and issues. After going through more tests, I was finally diagnosed with lupus and put on medications to treat my symptoms and eventually get to a better place.
I am now in my mid 40's, and outside a few disease blips and bumps along the way, life with lupus has been pretty good. It would not be this way if it weren’t for the patients before me who participated in research studies, shared their lupus experiences, and ultimately helped bring new drugs to the market that actually addressed the disease and not just the symptoms. My experiences made me realize how being our own advocates can positively shape our future with lupus. Being involved in clinical trials, research surveys and other studies not only brings hope to me, but also to future 15-year-olds trying to get through 9th grade unscathed by lupus.
We have to continue sharing our stories and experiences with lupus researchers if we want to find a cure for this complex disease. I was honored when presented the opportunity to serve as patient advisor on the steering committee charged with helping to develop the Lupus Foundation of America’s new online platform called RAY: Research Accelerated by You. In my role on the steering committee, I loved being able to hear from incredibly smart physicians and researchers while providing my own insight into how this platform could benefit people with lupus and their caregivers. We had a goal to develop a research data platform that’s easy for people with lupus to use, accessible from your home and at the end of the day will greatly help researchers accelerate the development of new treatments and improve disease outcomes – and I’m proud to say we did just that and more!
As more people with lupus get involved with RAY, the more we, collectively as a lupus community can do to impact the disease course in a positive way. Your lupus experience is the key to solving lupus, and it is absolutely critical to helping us reach a future free of lupus.
I encourage those looking to be hands on in the fight against lupus and wanting to move lupus research forward to join me and get involved with RAY. I’ve personally found participating in RAY to be exciting! Your participation in RAY, just like mine, will make a difference! So, get involved because we have millions of people impacted by lupus counting on us.
-Christy F., Lupus Warrior