Patient Advocate Spotlight: Apollonia Bynum

10.12.17

A single mother of three, Apollonia Bynum of Louisiana is all too familiar with pain.

Eight years ago, Bynum was diagnosed with interstitial cystitis (IC), a chronic bladder condition that causes recurring pelvic pain, pressure as well as urinary frequency and urgency. Bynum is part of the just five percent of IC patients who suffer from end stage, or severe, IC, which is characterized by its intense pain, hard bladder and often presence of Hunner’s ulcers – bleeding areas on the bladder wall.

“The pain is debilitating,” said Bynum. “I have had 15 surgeries in the last five years and doctors have run out of options.”

Bynum’s condition means frequent visits to the doctor. As a result, she missed prolonged periods of work and was eventually let go from her job after receiving poor evaluation scores related to her attendance. Bynum’s insurance plan was through her employer.

“I can’t control my disease or when it requires me to visit the doctor,” said Bynum. “If I could, I wouldn’t miss work because I need insurance coverage and money to provide for my three children – my son is legally blind and requires extra care that I can’t afford unless I am working.”

To make matters worse, Bynum was recently diagnosed with fibromyalgia – a disease characterized by widespread pain and fatigue. Traditional treatment options have failed to ease her fibromyalgia-related pain, and doctors are, once more, at a loss for how to treat her.

Like many who suffer from chronic conditions and debilitating pain, Bynum has struggled to communicate how her on-going battle with IC and fibromyalgia affect her wellbeing. For many who don’t have a chronic disease, invisible conditions are difficult to comprehend. Like many, Bynum has found her life as a patient alienating, and her experience resulted in Bynum sinking into depression before coming up with a solution: Limitless.

Located in Louisiana, Limitless is an organization Bynum is creating to encourage chronic disease patients to live a life outside of their disease. It will be used as a resource and support center for those who need answers and advice when it comes to their disease. Bynum hopes to have a website up for the organization within the next few months.

“I want to let people know you aren’t bound by your disease – you can still reach for your dreams and keep moving forward with life,” said Bynum. “Limitless will provide patients with the information they need to successfully manage their disease while acting as a place for people to share their experiences so others know they aren’t alone.”

Like Limitless, the Chronic Disease Coalition recognizes the power in sharing your story, which offers support, comfort and hope for others battling the same diseases. Join the coalition today and have your voice be heard so others like Bynum don’t have to struggle alone.