Two sisters who have spent a lifetime battling the devastating effects of a crippling neuromuscular disease can look forward with hope, thanks to a new drug therapy program that many health care professionals view as nothing short of miraculous.
“It’s true that Spinraza doesn’t offer a cure at this time, but, in my opinion, this is a miracle drug,” said Anthony Geraci, MD, director of neuromuscular medicine, Northwell Health. “At this point in my career, to be able to see such a profound change in my patients by offering them a new treatment where there was none before – yes, I’d say it is a miracle.”
Dr. Geraci described a new drug therapy treatment that offers new hope to patients living with spinal muscular atrophy (SMA). The Spinraza spinal injection, approved by the FDA in December 2016, has already proven to increase mobility, strength and stamina in patients living with this neuromuscular disease.
“SMA is a genetic disease affecting the part of the nervous system that controls voluntary muscle movement,” said Dr. Geraci. “Most of the nerve cells that control muscles are located in the spinal cord, which accounts for the word spinal in the name of the disease. SMA is muscular because its primary effect is on muscles, which don’t receive signals from these nerve cells. Atrophy is the medical term for getting smaller, which is what generally happens to muscles when they’re not active.”
Two beneficiaries of this revolutionary treatment therapy are Lisa Panzica, 40, and her sister, Laura Chamaidan, 38, both of New Hyde Park. They were the first sibling pair in New York State to receive Spinraza injections.
Ms. Panzica, an employee of Northwell Health, started showing symptoms when she was a toddler but wasn’t diagnosed until later. “My parents took me to a variety of doctors and therapists,” she said. “I received my diagnosis of SMA when I was just 10 years old. Living with SMA has presented me with challenges and obstacles every day. The most difficult is the uncertainty and unpredictability of the disease. With SMA, you have good goods and bad days and not knowing day-to-day if I will have the strength to achieve my goals can be extremely discouraging.”
Citing the positive attitude and sense of humor that gives her strength, Ms. Panzica stated proudly that she has persevered and “achieved anything I have set my heart and mind to.” She thanked her sister and her mother for providing her with unending support and encouragement.
Ms. Chamaidan began to show signs of the disease at the age of 6. “I would push on the floor to stand up. I would wobble when I walked and I used to fall a lot.”
All of this did not stop Ms. Chamaidan from fulfilling her life-long dream of becoming a mother. She is now the proud mother of three youngsters, ages 6, 10, and 17, who are, she says, “my world.”
“Even on my weakest days, I get up and make sure that my kids are taken care of,” said Ms. Chamaidan. “Although those days are a battle, I do what I have to do – even if it takes a lot longer.”
For Ms. Chamaidan, living with SMA can be viewed as a learning experience. “I feel my disability is teaching my children self-reliance, maturity and the realities of life,” she said. “I want them to learn that life is not always easy, but that it is always worth living and it is what you make of it.”
Both sisters agree that SMA has already given them increased mobility and new hope. After learning about Spinraza last year, they returned to the hospital where they had been treated as children, but were told that the drug would not be used on adults. After doing a bit of research, they learned of Dr. Geraci and were thrilled to hear that he would provide them with Spinraza treatments – to be covered by their insurance.
After initial loading doses of four injections, both sisters report vast improvements. Ms. Panzica is more independent at work, and takes great pleasure in the simple task of opening and closing her office door. Ms. Chamaidan is delighted to be able to stay up later with her children, whether that means going to the park of helping out with homework. Both report increased mobility, core strength and stamina.
They also agree that the availability of Spinraza offers renewed hope to young children who are newly-diagnosed with SMA. As her sister nodded in agreement, Ms. Panzica said: “I am especially grateful that Spinraza will help so many children, children that may not have had much of a chance at life. I have been given hope and a miracle, one that I never thought I would see in my lifetime.”
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About Northwell Health
Northwell Health is New York State’s largest health care provider and private employer, with 22 hospitals, over 550 outpatient facilities and nearly 15,000 affiliated physicians. We care for more than two million people annually in the New York metro area and beyond, thanks to philanthropic support from our communities. Our 62,000 employees – 15,000+ nurses and 3,900 employed doctors, including members of Northwell Health Physician Partners – are working to change health care for the better. We’re making breakthroughs in medicine at the Feinstein Institute. We're training the next generation of medical professionals at the visionary Donald and Barbara Zucker School of Medicine at Hofstra/Northwell and the Hofstra Northwell School of Graduate Nursing and Physician Assistant Studies. And we offer health insurance through CareConnect. For information on our more than 100 medical specialties, visit Northwell.edu.