Meet Barbi, Advocate for Lupus Research
Barbi Manchester has always been a fighter. While in her teens, she fought hard to become a member of the Mt. Airy, North Carolina high school football team, earning a position as the team's kicker. During her senior year, she ranked seventh among the top high school kickers in the state.
"My football participation taught me many lessons about fighting for something worth having…fighting for important things. I had to be twice as good as the boys to secure my starting position as a placekicker in this male-dominated sport."
Barbi's athletic endeavors didn't stop with football, however. She also excelled in soccer, softball, track, and swimming. Barbi continued to work hard in her studies to secure a rewarding career, eventually fulfilling an ambition to become a surgical nurse.
Things were going well for Barbi, but her life was about to change drastically.
"In the summer of 2007, I started to experience extreme fatigue and weight loss. Within one month, I went from 125 pounds down to 89 pounds. The skin also was peeling off of my hands, all the way down to where my fingertips were raw. That's when I finally decided I needed to see a doctor."
After being referred to a specialist and having extensive bloodwork, cultures, and biopsies, Barbi eventually was diagnosed with lupus."
"I was like, okay, just give me the medicine. Give me a prescription, and I'll be on my way. They said, 'well, it's not that easy.' That's how my journey with lupus began. "
Like most other people with lupus, Barbi knew very little about the disease and its potentially devastating impact on the body. She started looking for any help on the Internet that she could find.
"I came across the Lupus Foundation of America website. That was the best thing that I could have done. They are very supportive, not just for me, but for my family. They have lots of programs and want everyone to be educated about the disease and how to handle it. They have been a huge part of my support system. I would definitely give them credit and say that they helped save my life."
Barbi was given several commonly-used medications to treat her lupus, but none seemed to relieve her symptoms. Lupus affects each person differently, and finding the right combination of treatments is a challenge. Dealing with the side effects of these medications also presents both a physical and emotional burden.
"There has been only one FDA-approved medication explicitly developed for lupus in 60 years. Unfortunately, it doesn't work for everyone with lupus, myself included. Many medicines used for lupus were developed originally for other diseases. It makes you stop and wonder, ‘what is going on here.' That is one of the reasons that I started coming to Capitol Hill in Washington, DC, and lending my voice, because it's essential. We need more medicines for lupus."
In 2008, Barbi attended the first of what would become many National Lupus Advocacy Summits. She, along with 300 other lupus advocates from around the country, joined forces with the Lupus Foundation of America. They advocated for more lupus research funding and for improved access to medical care and better treatment options.
"Going up to Capitol Hill and speaking to the senators and representatives was the best thing. I learned so much about the Lupus Foundation of America and about my disease. I also met some incredible advocates and LFA leaders that became friends and part of my support system. I embraced the empowerment of that knowledge from the LFA and have never looked back."
"We must make our voices heard. We have to give the FDA reason to approve better therapies, ones that are not as invasive, therapies that are not as harmful to us, that are going to cause more symptoms or different symptoms other than the ones that we already have."
Barbi gives a lot of credit to the Lupus Foundation of America for the advances in research on lupus that are bringing us closer to achieving the organization's vision of 'a life free from lupus.'
"I am so grateful for the LFA and their tireless efforts to receive funding for research through the NIH and other government agencies. Somebody's life depends on this."
You can join Barbi and hundreds of other lupus advocates to help secure more funding for lupus research by sharing your story with members of Congress. Learn how you can become an advocate for lupus.