Finding a purpose

Editor's note: Since initial publication, the Phase 3 clinical trial described in this story has become an FDA-approved treatment for macular telangiectasia type 2, known as MacTel. If you have been diagnosed with MacTel, make an appointment with us to find out if this treatment is right for you.
 

When Stacy Miller found herself couch-bound for months after a head injury in 2015, she kept herself busy with books. At first, she was just following her neurologist’s advice to keep her brain active, but soon it was more than that.

Miller, a retired U.S. Air Force security police and communication officer with two decades of military experience, realized her next calling was in the pages of books that she would fill with her own prose. She practiced by writing fanfiction online and enrolled in a writing academy at Golden Crown Literary Society.

Then, just as her new career as a creative writer was emerging, eye strain drove Miller to her optometrist for a check-up. Instead of leaving with a new glasses prescription, Miller got a shocking diagnosis: macular telangiectasia type 2, known as MacTel. The rare disease causes a loss of central vision and can make things like reading and driving difficult. There was no approved treatment.

“I was just numbed by the diagnosis,” Miller said. “I was starting a brand-new career becoming an author, and I’m thinking, am I going blind? I had no idea what this disease truly meant for my future.”

The search for support

Following her diagnosis, Miller saw an ophthalmologist, and there her worries were amplified. She learned there was no cure for MacTel, nor were there options to circumvent the disease’s progression.

She turned to the internet to do her own sleuthing after the devastating news. Miller found a Facebook discussion group with 1,700 members ready to talk about their own journey with MacTel. It was there, Miller says, she found hope. “That particular group has been a godsend,” she said. “I learned so much about the disease, I learned I wasn’t alone.”

It was also in that Facebook group Miller learned about the clinical trial she would later participate in at the Byers Eye Institute. Miller placed her name on the registry for consideration, and tracked down one of the trial’s principal investigators, Diana Do, MD, professor of ophthalmology and vice chair of clinical affairs at the Byers Eye Institute.

Do has treated patients with MacTel for 15 years, and Miller was already well-versed in the disease and its potential impact on her career when they met in 2020, she said.

“She is such a dynamic woman who is so talented,” Do said. “I was impressed with her from the first minute I met her, because she is so passionate.”

The trial involves transferring cells into the eye to produce a protein, called ciliary neurotrophic factor (CNTF), which could help slow the MacTel’s progression. Trial participants either got the cell therapy or a placebo, but wouldn’t know which until the trial was over.

Miller was in. “I wanted to do this not only for myself, but for others to have a fighting chance of preserving their vision for longer,” she said.

On February 27, 2020, Miller was one of the last of the trial participants to receive the surgery. While the world closed down due to the Covid-19 pandemic, her spouse would drive her three hours each way every other month so Do could evaluate her progress.

“Without Dr. Do’s encouragement in helping me to understand the disease and get over my fear, I wouldn’t be where I am today,” Miller said. “She made me more determined to overcome this.”

Today the results from phase 3 of the clinical trial are in the hands of the Food and Drug Administration (FDA) for review. She expects their feedback any day and is hopeful that full approval will lead to broader treatment availability for her patients.

In the meantime, the two women have grown close, almost familial, they say.

“Stacy is just so creative, and such a role model for other patients,” Do said. “Even those who have vision-threatening diseases like her can be such strong advocates for research and finding possible cures for these conditions.”

Miller has written 16 books with more on the way. She’s hopeful she will keep her vision and continue writing long into the future.