Historically, people with ALS were thought to be in one of two groups: those with familial ALS (fALS) and those with sporadic ALS (sALS).
What is ALS? / Familial ALS and sporadic ALS
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When someone is diagnosed with sporadic ALS (sALS), it means that they have no known family history of the disease. The majority of people with ALS are classified as sporadic. However, many of these patients may be unaware of a family history of the disease.
The second type of ALS someone may be diagnosed with is familial ALS (fALS). It is defined by a known family history of the disease, where one or more relation has a confirmed diagnosis of ALS.
While it may seem that ALS would only have a genetic component in people with fALS—since genetic mutations are inherited from one’s parents—this is not the case. When looking at the total ALS population:
Knowing whether you have a genetic component to your ALS may help you to better understand the basis of your condition, allow for more comprehensive healthcare decisions, as well as inform family planning for future generations. It may also allow for genetic counseling to help you understand what it means to have a genetic mutation.
For these reasons, you may be referred to speak with a genetic counselor before, during, and after receiving genetic testing results. A genetic counselor can further explain in detail the benefits, risks, and limitations of genetic testing to you.
Staying up to date with information about genetic ALS could help you and your loved ones communicate more effectively with your doctor about your disease.