In these times we live in — the information age — we have access to more facts and data than ever before, but not everything we read or watch is correct. The Ice Bucket Challenge brought unprecedented awareness to the general public about ALS, but with more exposure also came more misinformation. Below we break down 5 of the most common misunderstood “facts” about ALS.
- ALS is a hereditary disease only.
There has been a lot of media coverage recently about the amazing breakthroughs that have happened identifying mutations in genes that cause familial ALS. Familial ALS accounts for about 5-10% of people diagnosed with ALS. In those families, there is a 50% chance that each offspring will inherit the gene mutation and may develop the disease. The majority of people diagnosed with ALS have no family history of the disease.
- Only older people are affected by ALS.
Most people who develop ALS are between the ages of 40 and 70, with an average of 55 years old. But there are many cases of people in their twenties and thirties diagnosed with ALS. This “Young-onset” ALS typically refers to patients younger than 45 years old and accounts for about 10% of all cases. The disease has even struck people in their teens.
- Brain function in not affected in people with ALS
While it is common for brain function to NOT be affected in people with ALS, approximately 20% of individuals with ALS also develop frontotemporal degeneration (FTD) which is characterized by changes in personality, behavior and speech. Another rare form of ALS, known as ALS-parkinsonism-dementia complex (ALS-PDC) is characterized by signs and symptoms of ALS in addition to movement abnormalities (slow movements, stiffness and tremors) and loss of intellectual function.
- If you’re paralyzed with ALS you can’t feel your body.
The latter stage of ALS is commonly described as someone being completely paralyzed. The definition of paralysis is a loss or impairment of voluntary movement, but many people also associate paralysis with a loss of feeling as well as function. This belief may be because many people with many people with brain or spinal cord injuries that are paralyzed also have lost feeling in the part of their body that is affected. People with ALS can still feel their body, even though they can’t control its movement.
- ALS affects everyone the same way.
From the initial symptoms to how the disease progresses, ALS can affect people very differently. The first symptoms of ALS can vary widely depending on the type of onset, bulbar or limb. People with limb onset usually notice a weakness in their hands or feet and people with bulbar onset might notice a change in their voice first. The rate at which ALS progresses is also quite different person to person. While, most people with ALS live with the disease for 2 to 5 years, some people may live 10 or more years with the disease.
You can find out more about ALS by visiting our website: www.alsa-stl.org.