Stem cell treatment gives Estero woman hope, health
AMY BENNETT WILLIAMS, AWILLIAMS@NEWS-PRESS.COM 4:17 p.m. EDT July 9, 2015
After an experimental stem cell treatment, a scleroderma/Madelung's disease patient talks about what's changed
Not many 50-something women volunteer to appear in front of the camera without so much as a hint of makeup, smiling in the bright Florida sun, but Gale Sylvester-De Mello does — happily.
That's because she's become something of a self-appointed poster girl for an experimental stem-cell treatment that's dramatically improved her life.
A year ago, Sylvester-De Mello, 59, would still have been smiling — that's just the kind of person she is — but there'd have been pain behind her grin, and a stiff, clenched tightness caused by scleroderma, one of three rare, deadly diseases racking her body.
So when she learned of an experimental protocol to bolster disease-fighting stem cells pioneered by hematologist/oncologist Dipnarine Maharaj at his South Florida Bone Marrow/Stem Cell Institute in Boynton Beach, she decided to go for it. "We had nothing to lose ... except $100K which is huge," Sylvester-De Mello says. "We're still in debt."
THE NEWS-PRESS
Estero woman fights constant pain from three diseases
Because the procedure is considered experimental, it wasn't covered by health insurance, so Sylvester-De Mello and her husband, Tony, had to learn to accept the kindness of others: fellow Wildcat Run residents, relatives, Tony's Coast Guard buddies, friends and disease support group members around the world.
Conventional medicine had largely failed the once-active career woman, leaving Sylvester-De Mello marooned in her Estero country club home, feeling lousy more often than not. It was hardly the life the Rhode Island native had envisioned. Armed with degrees in criminal justice and paralegal law from Roger Williams University, De Mello had been a child abuse investigator, undercover narcotics agent and victim advocate. Then she opened her own private investigation company while teaching police academy and college criminal justice courses.
That all ended in 1991 when she came down with a disabling circulatory illness that reduced blood flow to her hands and feet: Raynaud's disease. Two years later, doctors told her she had scleroderma, an autoimmune disease that hardens skin and connective tissues. They gave her eight years to live. Then in 2006, she was diagnosed with Madelung's, which causes fatty tumors to form, often on the back, neck and arms.
Each of the three potentially fatal conditions are so rare they're known as orphan diseases, and each took its own toll. The Raynaud's left her fingers and toes dark and numb, the scleroderma tightened her mouth and esophagus so much she was on the verge of needing a feeding tube, while the Madelung's had puffed her arms and back so much tears would fill her eyes as she looked in the mirror.
These days, any tears are likely to be from how much better she looks and feels. No, things aren't perfect, she says — the Raynaud's still troubles her — but Sylvester-De Mello is hardly complaining. She now looks and feels like a different person. She sleeps as easily as she smiles. She's down 17 pounds. She's stopped taking seven major medications she once depended on.
"It's been something that Tony and I could not even have imagined," Sylvester-De Mello says. Get her talking about Tony, and you're likely to glimpse a few more tears. He's been her rock, she says, crisscrossing the country with her, enduring interviews, appointments and disappointments without ever complaining
"I may not have been blessed with health, but I have been blessed with a wonderful, loving family, caring, terrific friends and an awesome husband," she says.
And now, Sylvester-De Mello has decided to share some blessings with others. To that end, she and Tony have formed a nonprofit, the Gale and Tony De Mello Scleroderma & Madelung's Foundation to help people with these diseases pay for their treatment.
"All monies raised will go to helping patients with scleroderma and Madelung's who need assistance where medical insurance will not cover expenses," she says. "We just want people to know that there may be light at the end of the tunnel and some help in the future to manage these orphan diseases."
AMY BENNETT WILLIAMS, AWILLIAMS@NEWS-PRESS.COM 4:17 p.m. EDT July 9, 2015
After an experimental stem cell treatment, a scleroderma/Madelung's disease patient talks about what's changed
Not many 50-something women volunteer to appear in front of the camera without so much as a hint of makeup, smiling in the bright Florida sun, but Gale Sylvester-De Mello does — happily.
That's because she's become something of a self-appointed poster girl for an experimental stem-cell treatment that's dramatically improved her life.
A year ago, Sylvester-De Mello, 59, would still have been smiling — that's just the kind of person she is — but there'd have been pain behind her grin, and a stiff, clenched tightness caused by scleroderma, one of three rare, deadly diseases racking her body.
So when she learned of an experimental protocol to bolster disease-fighting stem cells pioneered by hematologist/oncologist Dipnarine Maharaj at his South Florida Bone Marrow/Stem Cell Institute in Boynton Beach, she decided to go for it. "We had nothing to lose ... except $100K which is huge," Sylvester-De Mello says. "We're still in debt."
THE NEWS-PRESS
Estero woman fights constant pain from three diseases
Because the procedure is considered experimental, it wasn't covered by health insurance, so Sylvester-De Mello and her husband, Tony, had to learn to accept the kindness of others: fellow Wildcat Run residents, relatives, Tony's Coast Guard buddies, friends and disease support group members around the world.
Conventional medicine had largely failed the once-active career woman, leaving Sylvester-De Mello marooned in her Estero country club home, feeling lousy more often than not. It was hardly the life the Rhode Island native had envisioned. Armed with degrees in criminal justice and paralegal law from Roger Williams University, De Mello had been a child abuse investigator, undercover narcotics agent and victim advocate. Then she opened her own private investigation company while teaching police academy and college criminal justice courses.
That all ended in 1991 when she came down with a disabling circulatory illness that reduced blood flow to her hands and feet: Raynaud's disease. Two years later, doctors told her she had scleroderma, an autoimmune disease that hardens skin and connective tissues. They gave her eight years to live. Then in 2006, she was diagnosed with Madelung's, which causes fatty tumors to form, often on the back, neck and arms.
Each of the three potentially fatal conditions are so rare they're known as orphan diseases, and each took its own toll. The Raynaud's left her fingers and toes dark and numb, the scleroderma tightened her mouth and esophagus so much she was on the verge of needing a feeding tube, while the Madelung's had puffed her arms and back so much tears would fill her eyes as she looked in the mirror.
These days, any tears are likely to be from how much better she looks and feels. No, things aren't perfect, she says — the Raynaud's still troubles her — but Sylvester-De Mello is hardly complaining. She now looks and feels like a different person. She sleeps as easily as she smiles. She's down 17 pounds. She's stopped taking seven major medications she once depended on.
"It's been something that Tony and I could not even have imagined," Sylvester-De Mello says. Get her talking about Tony, and you're likely to glimpse a few more tears. He's been her rock, she says, crisscrossing the country with her, enduring interviews, appointments and disappointments without ever complaining
"I may not have been blessed with health, but I have been blessed with a wonderful, loving family, caring, terrific friends and an awesome husband," she says.
And now, Sylvester-De Mello has decided to share some blessings with others. To that end, she and Tony have formed a nonprofit, the Gale and Tony De Mello Scleroderma & Madelung's Foundation to help people with these diseases pay for their treatment.
"All monies raised will go to helping patients with scleroderma and Madelung's who need assistance where medical insurance will not cover expenses," she says. "We just want people to know that there may be light at the end of the tunnel and some help in the future to manage these orphan diseases."