When Rachel Wollan was diagnosed with relapsing polychondritis by a doctor near her home in Fairmont, Indiana, her first instinct was to take action before her appointment with a specialist a week later. “I’m a researcher,” she says. “I am an analyzer. I am a planner. So, I did what you’re not supposed to do and got on Google.” She laughs. “I like to know what questions I need to ask the doctor, but everything was extremely vague, and everything said ‘terminal.’”
Because so little is published about RP, Rachel quickly ran out of primary source material to read. Still, she kept searching. “I researched every aspect of the disease,” she says, “like where all the cartilage is in the body, that kind of thing.” When she saw the specialist, she felt informed enough to ask a few questions, but she still didn’t know even basic information about the condition, like whether it was an autoimmune disease, a connective tissue disease, or both.
Then, she found the Relapsing Polychondritis Awareness and Support Facebook page. There, people were posting information she couldn’t find elsewhere, which became especially helpful when Rachel’s insurance company denied her request for Humira. They said it wasn’t part of the protocol for treating RP. Rachel argued that there is no protocol for RP — it’s too rare of a disease — but was still denied and looking for a potential game plan when she posted on Facebook last October.
After Rachel requested help, Dr. Marcela Ferrada reached out and asked her to come to the National Institute of Health in Washington, D.C. If it hadn’t been for a grant from Friends of Patients at the NIH, Rachel wouldn’t have been able to afford the trip, during which a dynamic CT scan revealed tracheomalacia. Thankfully, the medical team was able to create a plan for care for Rachel to take to her pulmonologist back home. She says,
“I want potential and current donors to know that their support is truly saving lives.”
And on the brighter side, the visit allayed her fears about permanent changes to her face. “I don’t have any lasting damage to the cartilage in my nose,” she says. “The cartilage in the ears looks okay at this point, as does my heart.” Compared to the information she was getting during her initial rounds of research, this news was relatively relieving. “It was very, very encouraging to be able to say, ‘It’s documented. I’m okay. This is not terminal at this point,’” she says.
The NIH visit was an unexpected blessing for Rachel, and one that came directly from the Facebook group. Still, she’s wary of relying too much on one informal source for information and support. “I really feel like we’re playing with fire,” she says. “Any decision we make is almost gut-wrenching because you’re always wondering if you’re about to progress your disease faster.”
For that reason, Rachel would like to see the day when RP patients no longer have to use social media alone to understand their disease, and she recognizes that the research at NIH is the best way to achieve that goal. “Physically, a lot of my abilities have been taken away from me,” she says. “I’m not able to hold down a job anymore, and I have to budget my energy to be able to spend time with my family. But still, I want to help us make progress in understanding the disease, so if there’s something I can do, I say, ‘Test away.’”
Rachel is grateful to the Relapsing Polychondritis Awareness and Support Foundation, the RPASF Facebook group, Friends of Patients at the NIH, and the medical team in D.C. for providing her and her family with hope. She says, “Most of what you first see after you’re diagnosed are the, ‘It could be fatal if…’ When that’s pretty much all you see when you’re doing research on your own, it can be pretty depressing.”