New Treatment Halts Rare ALS Progression in New Jersey Mother
Life-Changing Diagnosis: Raziel Green's ALS Journey
Eight years ago, Raziel Green, a 52-year-old mother and avid runner from New Jersey, received a life-altering diagnosis of a rare form of ALS. Despite leading an active lifestyle, she began experiencing unusual symptoms over a decade ago. What started as heavy legs during her runs gradually progressed to difficulties climbing stairs at home. Her determination and resilience set the stage for an inspiring story of hope and perseverance.
Battling the Odds: Seeking Expert Opinions
Initially, Raziel struggled to find answers as her symptoms worsened, leading her to consult multiple neurologists. Her journey was challenging, as the first specialists she saw couldn't identify the issue. Undeterred, Raziel pushed for more comprehensive testing, leveraging her family's history with the disease. It was only after consulting a specialist in genetic diseases that she received her definitive diagnosis of the SOD1 gene mutation causing ALS.
A Ray of Hope: Joining a Clinical Trial
Following her diagnosis, Raziel discovered a clinical trial at Massachusetts General Hospital for an innovative treatment called QALSODY® (tofersen). This treatment, developed by Biogen, is administered directly into the spinal fluid every few weeks. Raziel was eager to participate, not only for her own benefit but also to contribute to the broader fight against this debilitating condition. Her involvement marked the beginning of a promising chapter in her battle with ALS.
Remarkable Results: Halting Disease Progression
Within just four months of starting QALSODY®, Raziel observed significant improvements in her health. Unlike the typical progression of ALS, her condition stabilized, and she showed no further decline. Her neurologist reported that over the years since her diagnosis, her symptoms remained consistent, a rare and encouraging outcome for someone with her condition. This remarkable response has provided Raziel with a renewed sense of hope and the ability to continue enjoying many of her daily activities.
Understanding QALSODY: Benefits and Considerations
QALSODY is specifically designed to address the SOD1 mutation responsible for certain cases of ALS. Medical experts highlight its ability to reduce the toxic effects of this genetic mutation, leading to slowed or halted disease progression in many patients. However, like all treatments, it comes with potential side effects, including inflammation and nerve pain in some individuals. Despite these risks, the long-term benefits offer a promising avenue for those battling this rare form of ALS.
Conclusion: Inspiring Hope for the Future
Raziel Green's story is a testament to the power of perseverance and the advancements in medical research. Thanks to treatments like QALSODY®, individuals with rare forms of ALS now have reasons to hope for a stable and fulfilling life despite their diagnosis. Raziel continues to participate in her family’s milestones and remains active in her community, embodying the spirit of resilience. Her journey not only inspires others facing similar challenges but also underscores the importance of ongoing research and support for those affected by ALS.
Read the full article here:
nypost.com