 Sponsored By Argenx
Gwen. Valencia, Associate Director, Global Patient Advocacy
Anaya, Myasthenia Gravis Patient Advocate
Rorey, Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP) Patient Advocate
Patient advocacy was discussed during this year’s Gwen Valencia, Associate Director, Global Patient Advocacy at Argenx. Valencia explained that part of the reason her firm participated in the discussion was to challenge the belief “that certain conditions don’t exist in certain communities.”
“We’re here to bring awareness to both of these two conditions but also just in general to autoimmune conditions because we know that sometimes the journey to diagnosis can be very long and very hard,” she said. According to the Autoimmune Association, “Autoimmunity is now one of the most common disease categories, ahead of cancer and heart disease,” and “on average, it takes 4.5 years and 4 physicians to receive a diagnosis.”
Both patient advocates shared their personal experiences and highlighted best practices for being an active participant in developing a treatment plan. They also noted that autoimmune conditions can infiltrate one’s life anytime, from early adolescence to mid-adulthood.
Anaya first noticed an issue with her body as a young student-athlete. “I would be playing sports, and I would just fall like fully laid out, and I would try to get up, and it’s my body was like concrete to the ground,” she said. The condition progressed. “It got to the point where I couldn’t chew or talk because my jaw muscles were so weak,” she continued. “My parents and I came together and decided something is wrong. It’s not something that’s run of the mill.”
Rorey was practicing law when symptoms showed up in his life. “I was at the point where I couldn’t carry groceries when I would try to carry groceries. I would drop them, or my arms would get weak. My skin would burn from head to toe. Like somebody just had put me in a fire,” he said. “That just broke me.”
After a lifetime of dealing with difficulties, including socio-economic disadvantages and living in foster care, he thought he could handle anything on his own, but this required help from other sources. “This was the first time in my life where I was not in control,” he said.
Anaya expressed disappointment at the way the doctors attempting to treat her chose to speak with the adults in her life instead of her. “Some doctors only spoke to my mother and never spoke to me to tell them what was going on with me, and that was so frustrating because She can’t tell you what’s happening,” she said.
Before locating a specialist familiar with her rare condition, she was dismissed by multiple physicians. “One doctor told my parents that I was just in such emotional distress about my life that it was playing out in my body, and they just needed to put me in therapy, and that would help, and I think that was the first time where I realized that this road would be very, very long,” Anaya continued.
Rorey used his legal skills when doctors could not explain what was happening with his limbs. Deducing that he needed a neurologist, he found one committed to figuring out his problem. “I found this doctor on my own, and thank God that I did because he was the preeminent doctor in neuromuscular diseases,” he said. After multiple painful tests, including a needle biopsy, he received a diagnosis.
He worked to communicate with his doctors and to get them to communicate with each other. “At some point, we all agreed that we were partners,” he said. “I wasn’t just a patient anymore. I was a partner with them.”
Anaya’s rare condition is even rarer in young people. “I was the youngest patient he had ever had by over 30 years. So, everything we did from that point forward, I was a guinea pig. There was no precedent,” she said. She devotes her time to advocating for young people to be included in the communities established around dealing with Myasthenia Gravis. “Young people are left out of the Myasthenia community,” she said. She advocated for herself with the school system and attended college despite being discouraged from doing so.
As time moved on, she became a partner in her own care.
“For me, being so young, I had to remember that my mom isn’t always at a doctor’s appointment with me. I need to be able to speak to these figures and take it out of my head that these all-knowing beings can also be just as confused as I am, and it’s okay to ask them questions,” she said.
“It’s okay to expect things from them.”
