Getting Started

"We're sorry you're here, but we're glad you found us" similar quote Short blurb that introduces this organization, not description of ALS Text below can be included into a short getting started summary of ALS

What is ALS?

ALS (amyotrophic lateral sclerosis) is a progressive, neuromuscular disease that attacks and kills motor neurons. When motor neurons die, the body loses control of its muscles, causing weakning, paralysis, and atrophy of the muscles over time. Currently, an estimated 30,000 people are living with ALS in the United States. ALS is relatively rare, occurring at an incidence of 1 in 50,000 people. Men are 1.5x more likely to get ALS than women.

Early Symptoms

Early symptoms commonly include weakening of the muscles and muscle fasciculations (twitching). There are no "defining" symptoms of ALS, and a diagnosis is made by a neurologist (not a primary care doctor) after ruling out other possibilities, like Lyme's Disease.

Outlook

Unfortunately, there are no cures for the disease. Average life expectancy after diagnosis is 2-5 years, but there are available treatments that can slow the onset of ALS. FDA-approved treatments include Radicava and Riluzole. Consult your neurologist for more details and prescription. Many off-label (unapproved) treatments are also used, but consulting your neurologist first is essential.

Causes of ALS

An ALS diagnosis is classified as either a "familial" or a "sporadic" case. Familial account for roughly 10% of diagnoses, while sporadic represent the other 90%.

• A familial case is passed down through the family. Certain genetic mutations, most commonly the SOD1 and C9ORF72 mutations, are direct causes of familial ALS.

• On the other hand, a sporadic case is ALS occurring without family history of the disease. Sporadic cases are less understood than familial ones: researchers believe causes of sporadic ALS can result from a combination of environmental triggers and genetic predispositions to the disease. However, there have been no discovered genes, like SOD1 or C9ORF72, that are directly causing onset.

Finding support

Finding support from other people along this journey is important. Financial support, emotional support, family support, community support, and all different kinds of help are available along the way.

ALS Facebook groups are a great place to start. With thousands of other patients connected through Facebook, support groups often provide a way to comfort each other, ask questions, and help each other through this journey.