About 33,000 people in the U.S. today are living with Amyotrophic Lateral Sclerosis (ALS). Clinicians suspecting or confirming an ALS diagnosis find themselves in an increasingly common position in the medical world today. They must tell their patient and families that an individual has a disease of progressive disability, likely to take their lives on average within 2 to 5 years, and for which there is not yet a curative treatment.
Videos: Rare Takes
In this video series, ALS experts discuss important topics related to diagnosing, managing, and treating the disease, from the importance of early diagnosis to collaboration with patients, families, and other providers.
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About 33,000 people in the U.S. today are living with Amyotrophic Lateral Sclerosis (ALS). Clinicians suspecting or confirming an ALS diagnosis find themselves in an increasingly common position in the medical world today. They must tell their patient and families that an individual has a disease of progressive disability, likely to take their lives on average within 2 to 5 years, and for which there is not yet a curative treatment.
A diagnosis of ALS leads the physician and patient into a highly emotion-laden conversation. Physicians are tasked with sensitively helping the patient balance their need for hope with the need to acknowledge the extremely challenging nature of their disease.
Disease progression in ALS varies based on the site of onset (bulbar vs. limb), the presence of genetic mutations (e.g., C9orf72, SOD1), and the rate of functional decline, as measured by the ALS Functional Rating Scale–Revised (ALSFRS-R).
Therapies that aim to target both genetic and cellular pathways in amyotrophic lateral sclerosis (ALS) are gradually emerging. Despite a median survival rate of 3-5 years from onset, some people living with ALS are defying the odds and surviving many years after diagnosis. With new means of proactive management helping slow progression, the hope is that providers may soon be able to offer these and future patients immunotherapies, genetic targeted and modifying therapies, and new delivery systems that are now at their inception or in a clinical trial.