ALS Symptoms in Women

Early amyotrophic lateral sclerosis (ALS) symptoms include slurred speech and muscle weakness, which eventually progresses to paralysis and death. Although ALS affects men more than women, some factors may increase women's chances of getting the disease earlier in life.

This article discusses ALS in women, including symptoms, causes, and prognosis.

An older woman sitting in a wheelchair outdoors

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How Common Is ALS in Women?

ALS is about 20% more common in men than women and is most likely to occur in people who are between 40 and 70 years old. A recent study suggests certain factors could be responsible for women getting the disease sooner than later. These factors include:

  • Early menopause: Women who go through menopause before age 50 were diagnosed with ALS six years sooner than women who became postmenopausal after 50.
  • Late menarche: Women who started their period after age 12 were more likely to be diagnosed with ALS earlier.
  • Late or no pregnancy: Women who had not experienced pregnancy or became pregnant after age 30 were at higher risk for an earlier ALS diagnosis.
  • Obesity: A higher body mass index (BMI) at age 40 correlated with an increased risk for early ALS compared to women with low to average BMIs.
  • Lifestyle: Women who were smokers experienced an earlier diagnosis of ALS than their counterparts.

Some researchers conclude that sex hormones like estrogen and progesterone may protect against ALS. That explains why women who achieve menopause early in life may be at higher risk for getting ALS sooner.

How Does ALS Affect the Body?

Motor neurons (nerve cells) carry messages from your brain, brain stem, and spinal cord to your muscles. Motor neurons control voluntary body movement. For reasons not fully understood, ALS damages and destroys motor neurons.

When muscles can't receive messages from the destroyed nerve cells, they no longer function properly. Therefore, muscles become weak, stiff, and atrophied (broken down). Eventually, the muscles stop working completely, resulting in paralysis. This process is the same in both men and women.

ALS, however, does not affect fertility or reproductive health; therefore, women with ALS can become pregnant. Because ALS doesn't affect the uterus, most births have good outcomes. There is no contraindication for breastfeeding with ALS; help with positioning and holding the baby may be necessary.

Functions Affected by ALS
  • Talking

  • Chewing

  • Swallowing

  • Breathing

  • Movement of all

    extremities

Functions Not Affected by ALS
  • Brain

  • Senses

  • Digestion

  • Urination

  • Bowels

  • Sexual function

ALS Causes

ALS is a complicated disease categorized as either sporadic or familial. Sporadic ALS (SALS) occurs in more than 90% of all ALS cases. Although it's not directly linked to family history or environmental causes, there is likely a genetic component. Familial ALS (FALS) is responsible for 5–10% of ALS cases and is a hereditary condition.

Though the cause of sporadic and familial ALS is similar in both genders, environmental factors may contribute to women getting ALS sooner in life.

Genetics

Genes are inherited from each parent and are responsible for specific characteristics, like eye color. Mutations in genes can lead to diseases such as ALS. The genes responsible for FALS can be passed to offspring, resulting in a 25–50% likelihood of getting FALS.

A few genetic mutations associated with ALS include C9ORF72, SOD1, TARDBP, and FUS. Although researchers don't entirely understand why genetic alterations cause ALS, they believe that mutations disrupt how specific proteins work in the body, leading to abnormalities.

Environment

Important to women, scientists have discovered that exposure to persistent pollutants interrupts the processes of the endocrine system, which is responsible for producing sex hormones. Decreased sex hormones can lead women to get ALS earlier in life. More research is needed to understand the cause of ALS in women.

Other environmental factors that could contribute to ALS include:

  • Beta-methylamino-l-alanine: A non-protein amino acid produced in the environment
  • Toxins: Radiation, metals, solvents, and electromagnetic fields
  • Warfare: Veterans have a higher incidence of ALS
  • Pesticides
  • Viruses
  • Exercise

ALS Symptoms in Women

Women are more likely to have bulbar-onset ALS compared to men. This means symptoms first appear in the face and neck, affecting speech and swallowing. Bulbar-onset tends to be more aggressive than limb-onset ALS.

Early Signs

Symptoms of ALS in women can be gradual and affect only one side of the body. Early symptoms include:

  • Muscle twitching in the face, neck, or tongue
  • Fatigue
  • Difficulty breathing
  • Slurred speech
  • Trouble chewing or swallowing

Later Signs

As ALS progresses, the symptoms affect both sides of the body and include all voluntary muscles. Late signs include:

  • Complete loss of movement
  • Need for a ventilator to breath
  • Inability to speak, chew or swallow

Even during late-stage ALS, the brain often remains intact unless there is frontotemporal dementia (FTD).

Outlook for Women With ALS

The outlook for women with ALS depends on the person and the severity of the disease. Most people with ALS survive two to five years after diagnosis; however, some women can live up to 10 or more years with the disease. Scientists continue to work at understanding the cause of ALS in hopes of developing better medications to treat it.

If you are a woman experiencing muscle weakness, difficulty swallowing, or difficulty forming words, it's vital to be evaluated by your healthcare provider immediately. ALS in women can begin with subtle changes that are often overlooked. Diagnosis and early treatment are imperative for living a longer life. Although there is no cure for ALS, maintaining quality of life is important while managing the disease.

Summary

Although men are more likely to be diagnosed with ALS, some factors make this disease unique to women. In addition to genetics and environmental considerations, female sex hormones may also play a role in the development of ALS. Difficulty talking, swallowing, or breathing is often an early sign. The outlook for women with ALS depends on the severity of the disease; however, death usually occurs two to five years after diagnosis.

Frequently Asked Questions

  • When do ALS symptoms typically first appear?

    Early symptoms of ALS can be subtle and overlooked, but as the disease progresses, symptoms become more recognizable. People between 40 and 65 are more susceptible to ALS.

  • What other diseases can be mistaken for ALS?

    Multiple sclerosis, Kennedy disease, and Lyme disease can be mistaken for ALS.

  • Can you check yourself for ALS?

    Although there's no way to check yourself for ALS, reporting changes in the strength and size of your muscles, along with changes in speech or breathing, can help your healthcare provider identify ALS.

13 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
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By Serenity Mirabito RN, OCN
Serenity Mirabito, MSN, RN, OCN, advocates for well-being, even in the midst of illness. She believes in arming her readers with the most current and trustworthy information leading to fully informed decision making.