Amyotrophic lateral sclerosis 1

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What is frontotemporal dementia in Amyotrophic Lateral Sclerosis?

About 5% of individuals with amyotrophic lateral sclerosis (ALS), regardless of family history, also have have frontotemporal dementia (FTD). Features of FTD include cognitive deficits in attention, abstraction, planning, and problem solving. Individuals with variants in the C9orf72 and CHCHD10 genes have been reported with ALS/FTD.

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How can you prevent muscle pain from Amyotrophic Lateral Sclerosis?

When does someone show symptoms of having Amyotrophic Lateral Sclerosis?

What is the life span of someone with Amyotrophic Lateral Sclerosis?

Are there physical limitations for someone with Amyotrophic Lateral Sclerosis?

What can I do to make life with Amyotrophic Lateral Sclerosis easier?

How are the needs of a child with Amyotrophic Lateral Sclerosis different than an adult?

Can someone with Amyotrophic Lateral Sclerosis get pregnant?

Are there times when treatment will change for me?

Do people with Amyotrophic Lateral Sclerosis need to change their diet or exercise?

Do some ethnic groups and age groups get Amyotrophic Lateral Sclerosis more often?

When was Amyotrophic Lateral Sclerosis first described?

When were the genes known to cause Amyotrophic Lateral Sclerosis discovered?

How can you prevent muscle pain from Amyotrophic Lateral Sclerosis?

As amyotrophic lateral sclerosis (ALS) progresses, muscles start to weaken and stiffen. This can cause pain to the patient. Range of motion exercises and stretches through physical therapy can help with muscle pain and prevent the formation of contractures (excessive tightening of muscle).

When does someone show symptoms of having Amyotrophic Lateral Sclerosis?

People can develop symptoms of amyotrophic lateral sclerosis (ALS) from adolescence through adulthood, depending on the type of ALS that they have. Juvenile-onset ALS is a term that is given to individuals with ALS who are diagnosed before age 25 and generally have a family history. People with familial, or inherited, ALS often have signs and symptoms at an earlier age than people with sporadic ALS. The mean age of onset is 56 years in individuals with no known family history (sporadic ALS) and 46 years in individuals with more than one affected family member (familial ALS or FALS).

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What is the life span of someone with Amyotrophic Lateral Sclerosis?

People typically live 2-5 years after the first signs of amyotrophic lateral sclerosis (ALS). About 10% of people survive at least ten years. Most people with ALS die due to respiratory failure.

Are there physical limitations for someone with Amyotrophic Lateral Sclerosis?

Patients with amyotrophic lateral sclerosis (ALS) typically require the use of a wheelchair shortly after the first signs of disease. Patients with ALS gradually lose their ability to move their arms and legs and gradually lose the ability to swallow and control their breathing. Patients with ALS eventually will need a feeding tube and breathing support.

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What can I do to make life with Amyotrophic Lateral Sclerosis easier?

Life with amyotrophic lateral sclerosis (ALS) can be difficult. Breathing machines, feeding tubes and medications are all ways to increase independence and increase the lifespan of patients with Amyotrophic Lateral Sclerosis. Additionally, physical, occupational and speech therapy and the support of social workers and mental health professionals are valuable parts of a care plan.

How are the needs of a child with Amyotrophic Lateral Sclerosis different than an adult?

Amyotrophic lateral sclerosis (ALS) can be seen as a juvenile-onset disorder. Juvenile-onset ALS is a term that is given to individuals with ALS who are diagnosed from adolescence to age 25 and generally have a family history. Juvenile and adult-onset ALS have a similar clinical progression but juvenile ALS tens to progress more slowly. The needs of a child with ALS will be similar to those of an adult, although a support and medical team that has experience with younger individuals is valuable. Depending on age of onset, support in addressing special education needs may also be required.

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Can someone with Amyotrophic Lateral Sclerosis get pregnant?

Infertility has not been described in people with amyotrophic lateral sclerosis (ALS). Due to the typical age of diagnosis, many adults with ALS have already had children and are past their childbearing years. For individuals who are diagnosed at younger ages, as long as they are still physically able, adults with ALS can have children. Women who are considering pregnancy should consult with a high-risk pregnancy specialist and their medical care team to determine if any medications or therapies given for ALS could impact a fetus.

Depending on the genetic cause of their disease and the family history, individuals with familial ALS may have a risk to have a child with the condition. If there is a concern about passing that genetic risk on, there are a couple options for family planning. One option is to adopt or use a sperm or egg donor instead of the genetic material from the parent with the condition. Another option is to have biological children, and know that there is a risk that each child could inherit this mutation. A final option, if you know the gene change causing ALS in the family, is having in vitro fertilization (IVF) with preimplantation genetic diagnosis (PGD). Through the process of PGD, embryos can be checked to see if they contain the mutation causing ALS in the family or not, and only embryos that do not contain the mutation will be implanted in the mother.

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Are there times when treatment will change for me?

Treatment is managed as symptoms change. As the disease progresses, patients typically need more treatment and more support. No changes to your medications or treatments should be made without the advise of a physician.

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Do people with Amyotrophic Lateral Sclerosis need to change their diet or exercise?

People with amyotrophic lateral sclerosis (ALS) will need physical, speech, and occupational therapy and the frequency may increase as the disease progresses. It is also important to have a nutritionist monitor food intake so to avoid malnourishment and to avoid complications related to swallowing difficulties. Most patients with ALS will eventually have a feeding tube to make sure they are getting adequate nutrition.

Do some ethnic groups and age groups get Amyotrophic Lateral Sclerosis more often?

People of all races, ages, and ethnic backgrounds can all be affected, but amyotrophic lateral sclerosis (ALS) is generally more common among white males, non-Hispanics, and people age 60-69. Men are more affected than women. There are also certain familial forms of ALS that are more common in specific populations due to a higher frequency of specific genetic variants in those countries. The incidence of an ALS/parkinsonism/dementia complex is higher in Guam.

When was Amyotrophic Lateral Sclerosis first described?

Dr. Jean-Martin Charcot first discovered amyotrophic lateral sclerosis as a unique condition in 1869.

When were the genes known to cause Amyotrophic Lateral Sclerosis discovered?

There are many genes that can cause familial forms of amyotrophic lateral sclerosis (ALS) and new genes continued to be discovered. The first discovery was in 1993, when scientists discovered that mutations in the SOD1 gene can cause familial ALS. That was followed by the discovery of the TARDBP gene in 2008 and the C9orf72 gene in 2011. SOD1 and C9orf72 are the genes that are known to cause 40-50% of autosomal dominant familial ALS. In 2016, mutations in the TBK1 gene was found to be associated with ALS.

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