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Eight years after receiving a diagnosis that returns life, a mother of New Jersey accredits a new “surprising” medication for stopping her illness on her way.
Raziel Green, 52, an active corridor and mother of two, was diagnosed with a rare form In 2017.
The former retail manager began to experience symptoms more than 10 years ago, when his legs began to feel heavy during what would normally be an easy race, Green told Fox News Digital during an interview in the camera.
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“A couple of months later, I began to fight up the stairs in my house,” he recalled.
Several months later, when Green began to experience problems of balance and muscle loss, he decided to see a neurologist, who told him there was nothing wrong.
Raziel Green, 52, an active broker and mother of two children (in the photo with their children), was diagnosed with a rare form of ELA in 2017. (Raziel Green)
Knowing that his mother and aunt had been diagnosed with a rare formGreen pressed to obtain more opinions and evidence. It was not until he saw a third neurologist, who specialized in genetic diseases, which diagnosed him the overal gene dysmutase 1 (sod1) and amyotrophic lateral sclerosis (ALS).
The disease, which is caused by mutations in the SOD1 gene, represents approximately 10% to 20% of genetic cases of ELA and from 1% to 2% of the cases of sporadic ELA, according to the Association ALS.
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Shortly after his diagnosis, Green learned about a clinical trial in Mass general for an experimental medicine: Qalsody® (Tofersen), which is performed by Biogen in Cambridge, Massachusetts.
The medicine is administered in the spinal fluid through a lumbar puncture every few weeks.
“We can speculate that because the drug is directed to DNA, it could be curative if it is administered early enough, but these tests have not yet been carried out.”
“They gave me the opportunity and I was lucky to be part of the trial,” he said.
“Knowing that we have the gene, I really wanted to do this not only for Me and my familybut for others that have this form of ELA. “
“It gives my children the opportunity to get the test and have this medicine as a preventive treatment,” Green said about the Qalsody medication. (Raziel Green)
In four months, Green said that he saw a “big difference” and that he has not worsened since then.
“I saw a neurologist and she compared notes for now and seven years, and you can’t see anything different from the day they diagnosed me.”
Benefits and risks
Qalsody is specifically designed to treat the SOD1 form of ELA lowering the toxic effects of mutations on the SOD1 gene, according to Timothy M. Miller, MD, PHD, Vice President of Research Neurology and co-director of the Als Center at the University of Washington in St. Louis.
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“Around 20% to 25% of people with ALS SOD1 treated with Qalsody have demonstrated not only the slowdown in progression, but also stopped completely or signs of improvement have been shown,” said the doctor, who was not involved in Green’s Care, to Fox News Digital.
Dr. Thomas Purvis, a neurologist at the Rockefeller Neuroscience Institute of West Virginia University, called Tofersen one of the “most exciting medications” for ELA in recent years.
The former retail manager began to experience symptoms more than 10 years ago, when his legs began to feel heavy during what would normally be an easy race, Green told Fox News Digital. (Raziel Green)
While the benefits observed during the 28 -week test period were “modest,” he said, patients began to look and feel better in the long term.
“This is often the case in clinical trials For chronic diseases: the benefit is better appreciated when treated patients are followed for a longer period of time, so it is difficult to say when the medicine is released recently how much benefit we can expect to see in the long term, “Purvis, who was not involved in Green’s Care, told Fox News Digital.
“We can speculate that because the drug is directed to DNA, it could be curative if it is administered early enough, but these tests have not yet been carried out.”
Some side effects have been seen in a small number of patients who have taken Qalsody.
“Approximately 7% of the treaties with Qalsody in the clinical trial had serious side effects, including honeyitis (inflammation of the spinal cord), radiculitis (nervous pain), greater intracranial pressure and others,” Miller shared with Fox News Digital.
Green is photographed hugging her son during one of her hockey games. Green said that his medicine has allowed him to participate in sports, graduations and other milestones of his children. (Raziel Green)
Some rare effects included severe headachesweakness and sensory loss, according to Purvis.
“Finally, we do not know the long -term consequences decades after exposing patients to these therapies, simply because there have been enough time,” he added.
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“However, current data seems to tell us that therapies are safe in the long term.”
Stephanie Fradette, Pharm.d., Head of the Neuromuscular Development Unit in Biogen (manufacturer of Qalsody), said that in the study of phase 3 value, Tenty-Treaty Participants experienced a 55% reduction in plasma neurofilament levels, a neurodegeneration marker, compared to a 12% increase in participants treated with placebo.
Today, Green uses a full -time cane and a wheelchair at long distances, but since his symptoms have not worsened, he can still do many of the things he enjoys. (Raziel Green)
“As we look forward in what follows for the research of ALS, our work in SOD1-ALS has shown that it is possible to slow down the devastating neurodegeneration that occurs in this disease,” Fradette told Fox News Digital.
“We continue to apply lessons of our recent research in SOD1-ALS, as well as an investigation that we have conducted in the last decade, to help us bring safe and effective therapies to the broader ELA community.”
‘I hope to move on’
Green expressed his gratitude for the opportunity to take Qalsody, which has now been approved by the United States Drug and Food Administration (FDA) and is available for any person diagnosed with this specific genetic mutation.
“I can still travel. I can still get up. I’m still independent in my daily activities.”
Every 28 days, Green is going to Receive the medicine.
Today, she is somewhat limited to her mobility. She uses a full -time cane and a wheelchair at long distances, but since her symptoms have not worsened, Green can still do many of the things she enjoys.
“The benefit is better appreciated when treated patients are followed for a longer period of time,” said a doctor. Green, in the photo here with his son, said that neurologists do not see any difference in their condition since Qalsody began to take. (Raziel Green)
“I can still travel. I can still get up. I’m still independent in my daily activities,” Digital’s Fox News told Fox. “I still go to the gym from time to time, when someone accompanied by someone.”
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Green has also been able to participate in the sports competitions of his children, graduations and other milestones.
The medicine has given Green, and other patients with the same gene, “I hope to move on,” he said.
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“And it gives my children the opportunity to get the test and have this medicine as a preventive treatment,” Green continued. “That was the main objective for me: stay stable in the future after receiving treatment.”
