Barbi Manchester has always been a fighter. As a teenager, she fought hard to join the high school football team in Mt. Airy, North Carolina, and earned a position as the team’s kicker. In her senior year, she was ranked seventh among the best high school kickers in the state.
“My participation in football taught me a lot of lessons on how to fight for something worth fighting … to fight for important things. I had to be twice as good as the guys to get my starting position as a foosball player in this one to secure male dominated sport. “
Barbi’s athletic endeavors didn’t stop with soccer, however. She also excelled in soccer, softball, athletics, and swimming. Barbi worked hard in her studies to ensure a rewarding career for herself and eventually fulfilled her ambition to become a surgical nurse.
It was going well for Barbi, but her life would change drastically.
“In the summer of 2007, I began to experience extreme fatigue and weight loss. Within a month I went from 125 pounds to 89 pounds. The skin also peeled off my hands, raw down to my fingertips. Then I finally decided that I had to see a doctor. “
After being referred to a specialist and doing extensive blood tests, cultures and biopsies, Barbi was eventually 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 simple.’ This is how my journey with lupus began. “
Like most other people with lupus, Barbi knew very little about the disease and its potentially devastating effects on the body. She started looking on the internet for help she could find.
“I came across the Lupus Foundation of America website. It was the best I could have done. You are not only supportive of me but my family as well. You have a lot of programs and you want everyone to know about the topic Illness and how to deal with it. They were a big part of my support system. I would definitely give them credit and say that they helped me save my life. “
Barbi was given several commonly used drugs to treat her lupus, but none appeared to relieve her symptoms. Lupus affects everyone differently, and finding the right combination of treatments is challenging. Dealing with the side effects of these drugs is also a physical and emotional burden.
“In 60 years there has only been one FDA-approved drug that was specifically developed for lupus. Unfortunately, it doesn’t work for everyone with lupus, including me. Many drugs for lupus were originally developed for other diseases. It makes you pause and wonder what’s going on here. That’s one of the reasons I started going to Capitol Hill in Washington, DC and casting my vote, because it’s important. We need more drugs for lupus.“
In 2008, Barbi attended the first of many National Lupus Advocacy Summits. She has joined the Lupus Foundation of America along with 300 other lupus advocates from around the country. They campaigned for more funding for lupus research as well as better access to medical care and better treatment options.
“Going up to Capitol Hill and talking to the Senators and Representatives was the best. I learned so much about the Lupus Foundation of America and my illness. I also met some incredible advocates and LFA leaders, the Friends.” and became part of my support. ” I have accepted the LFA’s empowerment of this knowledge and have never looked back. “
“We need to make our voices heard. We need to give the FDA a reason to approve better therapies, those that are not as invasive, therapies that are not as harmful to us, that will cause more symptoms or other symptoms than these. ” that we already have. “
Barbi pays tribute to the Lupus Foundation of America for the advances in lupus research that bring us closer to the vision of organizing “Life Without Lupus.”
“I am so grateful to the LFA and their relentless efforts to obtain research funding from the NIH and other government agencies. A person’s life depends on it. “
You can join Barbi and hundreds of other lupus advocates in raising more money for lupus research by sharing your story with members of Congress. Learn how to become a lupus attorney.