In many ways, Heather Barlow is a typical 23-year-old young woman. She’s passionate about her education and is pursuing a double major in political science and anthropology at Rhode Island College. She works as a retail manager at Ocean State Job Lot. But she’s also going blind.
At age 18, Barlow was diagnosed with dry macular degeneration; a genetic disorder that would eventually rob her of her vision.
The news was devastating, and for five years, Barlow has visited specialist after specialist as her sight gradually worsened.
But the diagnosis wasn’t entirely somber: dry macular degeneration can be treated, whereas wet macular degeneration cannot. The difference between the two lies in the growth of new blood vessels growing where they’re not supposed to, which is what happens in the wet form. Dry macular degeneration is a result of the thinning and aging of eye tissue, which results in pigment deposits that cause blind spots.
A recent trip to the DMV turned into a life-changing experience when Barlow was told she hadn’t passed the eye exam, and therefore couldn’t renew her license. It was then that Barlow knew she was rapidly nearing the point of losing her vision completely.
“I like to be independent,” she said. “And all of a sudden, I can’t drive.”
Her condition baffled doctors; they were used to seeing this condition in people three times Barlow’s age. Barlow has been wearing glasses since the age of 10, and said macular degeneration runs in her family. Over the years, Barlow said her vision worsened, but she remained positive she wouldn’t face the same vision problems members of her family had.
“The worst part is going blind,” she said. “Having something and taking it away, that’s horrible.”
After consulting with specialists in Boston and Rhode Island, Barlow began doing her own research. What she discovered was a fairly new treatment involving the injection of adult (non-embryonic) stem cells into optical tissues. The treatment had been proven effective in many cases but is not Food and Drug Administration (FDA) approved in the U.S.
One day, Barlow received a phone call from Steven Levy, an American doctor who invited her to be a part of a group of patients to be treated in Vienna, Austria.
“Of course I was interested,” said Barlow. “I didn’t want to lose any more of my eyesight.”
Barlow had never had surgery before, and was nervous, especially since it involved multiple locations of her body.
The stem cells would be injected behind her eyes, but they would be taken initially from bone marrow within her hip. When stem cells are taken from an adult donor, or from within the own person’s body, they are referred to as “adult” stem cells, versus the controversial embryonic stem cells taken from fetuses.
Barlow arrived in Vienna on May 26 and flew back to the U.S. on June 6. Her surgery only took a few hours, but her hospital stay lasted three days. When she awoke from the surgery, her eyes were crusted together and swollen. Eventually, she was able to open them and look in the mirror.
“I was really scared,” she said. “Both eyes were really puffy and bright red. My eyelashes were falling off; I looked like I had my eyes tattooed.”
The redness Barlow saw in the mirror was the stem cells. The dissipation of the redness, she explained, means that the stem cells are being absorbed.
Since the operation, the redness has been gradually receding, and the sclera is returning to its normal color: white. Barlow said her vision seems to be improving, and doctors will monitor her progress for six months. Barlow believes her recovery will be partially psychological, too.
“If you think there’s a chance it will improve, it probably has,” she said.
For now, Barlow is wearing eyeglasses with her weakest prescription. She hasn’t gotten her license back yet, but she’s confident that will come in time.
Barlow’s parents were extremely supportive, and even cashed in a CD to pay the $30,000 for the trip and procedure. Of course, the treatment would have been cheaper without the expenses of traveling to Austria, and Barlow is now advocating for the life-changing procedure to get clearance in the U.S.
“I wish there was something I could do so that more people have the opportunities to help themselves,” she said.
Barlow plans to attend a convention in Florida in December to speak about the benefits of stem cell therapy. She will be frequenting Florida to participate in more research and studies following her treatment.
The cost of all of her exams, doctor’s visits, trips, vitamins and surgeries totals in the tens of thousands. Barlow said she is grateful to her parents for their emotional and financial support, and is also happy she can continue to work and pursue her college degree.