WSVN — Imagine an incurable disease that causes your skin to become so hard and tight, you feel as if you’re turning into a statue. One local woman is living that nightmare, and her only hope is an expensive, experimental treatment being done right here in South Florida. 7’s Lynn Martinez has the special assignment report “Skin Deep.”
Six years ago, Jessica Massengale was a beautiful, young woman going on family cruises and having fun with friends. Today, she barely recognizes the person in those pictures.
Jessica Massengale: “I don’t know if I’m going to ever get back to that normal point of my life.”
At just 22, Jessica was diagnosed with scleroderma, a painful autoimmune disorder that is both baffling and incurable.
Jessica Massengale: “‘Sclero’ means ‘hard.’ ‘Derma’ means ‘skin.'”
Each year, the disease destroys more of Jessica’s body.
Jessica Massengale: “At least 80 percent of my skin color is gone.”
Her face is becoming mask-like, and her skin is thick, hard and tight, making movement difficult.
Jessica Massengale: “I could describe it as if someone took an IV of concrete and lets that concrete just take over your entire body, and it’s like you’re turning into a statue.”
The 26-year-old relies on her mom for help doing simple things, like brushing her hair.
Jessica Massengale: “It’s the worst feeling you could ever feel, not being able to even (crying) … barely being able to pick up your cup of water and having to ask, ‘Can you help me with this?’ Or going to the bathroom in public and not being able to pull up your pants.”
Conventional medicine can no longer help, so Jessica is making a desperate attempt to slow down her disease with an experimental treatment that uses stem cells.
Dr. Dipnarine Maharaj: “My understanding of the immune system, and how stem cells work to repair the immune system, led me to develop this new protocol.”
Dr. Dipnarine Maharaj is a pioneer in stem cell research. For the next six weeks, he will be injecting a protein into Jessica which releases disease-fighting stem cells from her bone marrow.
Dr. Dipnarine Maharaj: “In a disease like an autoimmune disease where there is immune disjunction, but there is also a very severe inflammation, the stem cells that we are releasing from the bone marrow into the patient’s bloodstream, it’s acting to reduce the inflammation but also improve the immune system.”
The hope is that Jessica’s stem cell count will continue to increase after the treatment, and ultimately the disease will stop progressing, and her body will heal itself. But the Boynton Beach doctor says there are no guarantees.
Dr. Dipnarine Maharaj: “There is good scientific evidence that it could work, but I couldn’t say to you or the patient, ‘Yes, this is definitely going to work.'”
But this Naples woman is giving everyone a reason to be optimistic. In March, she became the first scleroderma patient to receive the experimental treatment.
Gale Sylvester-DeMello: “We have experienced nothing but amazement.”
Like Jessica, Gale’s skin was tight, but her insides had also hardened.
Gale Sylvester-DeMello: “My esophagus, definitely, was definitely hardening. I was about three months out from a feeding tube.”
It’s been four months since the treatment, and already, Gale’s skin is loosening.
Gale Sylvester-DeMello: “I can actually pinch skin. Before, I couldn’t pinch anything.”
She’s off five major medications, and the problems with her esophagus have disappeared.
Gale Sylvester-DeMello: “And they’re small little steps, but small for another person is absolutely humongous for my husband and I.”
Jessica is praying for those same results.
Jessica Massengale: “My biggest hope is to gain some of my independence back. I’m young, and I want to date, and I want to travel, and I want to do all these things.”
Insurance does not cover experimental treatments, and it could cost more than $60,000. Jessica has fundraising pages to help pay for the treatment. Lynn Martinez, 7News.
FOR MORE INFORMATION:
Jessica’ Massengale’s GoFundMe page
Jessica’ Massengale’s fundraising page
Jessica’ Massengale’s Facebook page
Dr. Dipnarine Maharaj
The South Florida Bone Marrow Stem Cell Transplant Institute
10301 Hagen Ranch Rd #600
Boynton Beach, FL 33437