Deanna’s year of difficulty, challenge and triumph
Deanna Molinaro, who lives with epidermolysis bullosa, celebrates her college graduation after losing her right arm below the elbow
IT’S BEEN A YEAR of changes for Deanna Molinaro.
The 25-year-old — a student, an artist, an aspiring costume designer and a volunteer — suffers from a rare genetic disease called dystrophic epidermolysis bullosa (known as EB). People afflicted with the disease lack the proteins that bind skin together, leaving it weak and prone to damage.
Throughout her life, Molinaro has dealt with the effects of her EB — one of the most painful diseases known to medicine — including managing the excruciating sores that cover ninety per cent of her body.
When the Spectator last checked in with Molinaro in February 2017, she was working on finishing her visual arts degree at Sheridan College and continuing to promote awareness of EB.
Since that time, there have been triumphs — Molinaro has graduated from her program and is officially launching her career as a freelance artist — but there have also been difficulties.
In June 2017, Molinaro’s right arm was amputated at the elbow after doctors discovered she had developed two types of skin cancer (another side effect of her EB). Doctors discovered the cancer in May of last year, and within weeks, Molinaro was scheduled for surgery.
“It all happened so fast. There’s been so much going on — there’s been a lot of adjustment,” she said. “I was always dominant with my right, and now I’ve switched over to my left. It’s just the little things now — picking up a cup is the most annoying thing in the world. And I always drop my phone now, even more than I did before.”
Molinaro is in the process of being fitted for a robotic prosthesis, which will allow her to perform the daily tasks that have become a struggle without the use of her dominant hand. The prosthesis would allow her more dexterity than before the amputation — because of the way her skin heals, Molinaro’s fingers have been permanently fused together and covered in scar tissue since she was a child.
“It will allow me to do more,” she said.
AS EB
is a progressive disease, the life expectancy for someone who suffers from it is 25. Those diagnosed with the disease are known as “butterfly children” because their bodies are so fragile.
Molinaro’s skin, which can erupt into massive blistering at the slightest touch, requires full-body dressing changes every other day. This painful process can take up to four hours, and Molinaro is on increasingly strong medication to help her cope.
Molinaro says that another change she has made in the past year is to begin using cannabis oil to help her manage her pain and help heal her ulcerated skin. The difference, she says, is remarkable.
“I would honestly recommend it to anyone who is willing to try it. My skin is healing so fast — it’s really, really incredible.”
Molinaro says that she’s aware there’s a stigma around using medicinal cannabis products, but for her, it’s allowed her to cut back on the extremely strong medication that she has relied on for decades to help ease her pain.
“I’m on a lot of heavy morphines and pharmaceuticals, and it just isn’t good for you,” she said.
Those diagnosed with the disease are known as “butterfly children” because their bodies are so fragile.
MOLINARO
IS ALSO preparing for the 20th annual fundraiser for the Dystrophic Epidermolysis Bullosa Research Association (DEBRA), a nonprofit organization dedicated to promoting awareness about the disease. As a special part of the celebration, one of Molinaro’s heroes, Fran Drescher, will be delivering video greetings. Molinaro met Drescher five years ago in New York City, and has kept in touch with the actress ever since.
“She’s an awesome person. She’s been so supportive,” Molinaro said. “She’s so confident. She just makes you feel good.”
To learn more about EB, or to register for the golf tournament, visit http://debracanada.org/