Finding New Community

American novelist and poet Wendel Berry said, “You can’t live entirely alone. You have to have some kind of support system.” Ilona, a longtime resident of the Washington, DC, area, knows firsthand the importance of having a support system. Having grown up in a military family, Ilona says she’s thrilled to no longer face the constant upheaval while still having her mom nearby.

“She checks in with me every single day,” Ilona said. “I’m grateful I have that support.”

Ilona’s support system has been critical since doctors told her she was living with both multiple sclerosis (MS) diagnosis and breast cancer. While undergoing chemotherapy and taking a preventative MS medication, Ilona developed debilitating symptoms that required her to be hospitalized. Paralyzed from the neck down, Ilona was completely reliant on others for her care.

“I couldn’t walk or talk,” Ilona said. “It was pretty rough.”

Puzzled by the symptoms, Ilona’s doctors conducted further review and determined that her symptoms were actually indicative of a more rare disease: neuromyelitis optica spectrum disorder (NMO). NMO is a disorder of the central nervous system that affects the eyes and spinal cord, and according to the Mayo Clinic many patients are often misdiagnosed with MS.

“I had no idea what I was dealing with,” she said.

Suddenly, Ilona found herself battling a new, rare disease while undergoing her cancer treatment. Between the costs of chemotherapy and the treatment for NMO, Ilona said she felt like she was financially drowning. Her long-term disability benefits and fixed income meant she may need to choose between her health and her finances.

“I can’t afford this,” Ilona said. “Do I buy groceries, or do I pay hospital bills?”

At the advice of her neurologist, Ilona joined an NMO support group to connect with other people living with the rare disease. A member of the group suggested she apply for financial assistance through The Assistance Fund’s (TAF’s) Neuromyelitis Optica Spectrum Disorder Financial Assistance Program. The program provides financial assistance with out-of-pocket costs such as copays, health insurance premiums, and incidental medical expenses for all FDA-approved treatment for NMO.

“I was so grateful,” Ilona said. “Applying was really easy!”

Having access to treatment has made an incredible difference for Ilona’s quality of life and mobility. No longer requiring a wheelchair, Ilona now walks with a cane and lives independently. And, in 2023, she attended Rare Disease Week with her brother, where she met nearly a dozen other people living with NMO.

“I’ve never met any other people who have NMO,” she said. “It was really cool connecting with somebody who went through exactly the same thing.”

With her health improving, Ilona continues to feel supported by her medical team and family. During treatments, her oncologist, neurologist, and nurses tell her how proud they are of her and how well she’s doing.

“I now have confidence after going through all of this,” Ilona said.