ALS Disease
ALS Disease
The National ALS Registry is a program that collects, manages, and analyzes data on people with ALS in the United States. Developed by the Centers for Disease Control and Prevention's Toxicology and Disease Registry (ATSDR), this registry aggregates information on ALS case numbers, collects demographic exposure data academic, occupational, and environmental studies from individuals with ALS to learn about potential risk factors for disease and inform attendees about research opportunities. The registry includes data from national databases as well as anonymous information provided by people with ALS. All information is kept confidential. People with ALS can add their information to the registry and register for more information.
Learn more about clinical trials
Clinical trials are studies that help us learn more about disorders and improve care. They can help connect patients with new and upcoming treatment options.
All types of volunteers are needed - those who are healthy or may be ill or have disease - of all ages, genders, races and ethnicities to ensure that the study results apply available to as many people as possible and the treatments will be safe and effective for everyone who uses them.
NINDS also supports the NIH NeuroBioBank, a collaborative effort involving several brain banks across the United States that provide investigators with tissue from people with neurological diseases and other disorders. Tissues from people with ALS are needed to allow scientists to further study the disorder. The goal is to increase the availability and accessibility of high-quality samples for research to understand the neurological basis of disease. Potential donors can start the application process by visiting Learn how to become a brain donor.
Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, is a rare neurological disease that affects motor neurons, the nerve cells in the brain and spinal cord that control voluntary muscle movement. Voluntary muscles are the muscles we choose to move to produce movements such as chewing, walking, and speaking. The disease is progressive, which means symptoms get worse over time. ALS cannot be cured and there are no effective treatments to reverse its progression.
ALS is a type of motor neuron disease. When motor neurons degenerate and die, they stop sending signals to the muscles, causing the muscles to weaken, begin to contract (muscle bundle) and atrophy (atrophy). Eventually, the brain loses the ability to initiate and control voluntary movements.
Initial symptoms include:
Muscle twitching in the arms, legs, shoulders, or tongue
Muscle cramps
Tight and stiff muscles (spasticity)
Muscle weakness affecting the arms, legs, neck or diaphragm
Difficulty chewing or swallowing
As the disease progresses, muscle weakness and atrophy spreads to other parts of your body. You can develop problems with:
People with ALS may not be able to stand or walk, get into bed or get up on their own, or use their hands and fingers. from (dysarthria)
Breathing (difficulty breathing); people with ALS eventually lose the ability to breathe on their own and have to rely on a ventilator
Weight maintenance and malnutrition
Muscle cramps and neuropathy (nerve damage or illness)
Anxiety and depression, because people with ALS are generally still able to reason, remember, understand, and perceive their gradual loss of function
Although uncommon, people with ALS can:
decision-making problems
develop some form of dementia over time
ALS does not affect your ability to taste, touch, smell or hear. Most people with ALS die of respiratory failure, usually within 3 to 5 years of the first symptoms appearing. However, about 10% of people with ALS survive for a decade or more.
Risk factors for ALS include:
Age—Although the disease can strike at any age, symptoms most commonly develop between the ages of 55 and 75.
Biological sex— Men are slightly more likely to have ALS. However, as people age, the sex difference disappears.
Race and ethnicity—Whites and non-Hispanics are most likely to get the disease, but ALS affects people of all races and ethnicities.
Some studies show that military veterans are about one and a half to two times more likely to develop ALS, although the reason for this is unclear. Possible risk factors for veterans include exposure to lead, pesticides, and other environmental toxins.
sporadic ALS and family
Almost all cases of ALS are considered sporadic. This means that the disease appears to be random, with no clearly associated risk factors and no family history of the disease. Although family members of people with sporadic ALS have a higher risk of developing the disease, the overall risk is very low and most will not develop ALS.
About 5-10% of all ALS cases are familial (also called hereditary or inherited). Mutations in more than a dozen genes have been found to cause familial ALS.
About 25-40% of all familial cases (and a small percentage of sporadic cases) are caused by a defect in the C9ORF72 gene, which makes a protein found in motor neurons neurons and neurons in the brain. Some people with this gene also develop a type of frontal lobe degeneration (FTD, a form of dementia) caused by atrophy of the temporal and frontal lobes of the brain.
Another 12-20% of familial cases are due to mutations in the SOD1 gene involved in the production of the copper-zinc enzyme superoxide dismutase 1.
In 2021, a team of scientists led by the NIH and the University of Translation Health Sciences-led Unification has announced that it has discovered a unique inherited form of ALS that affects children as young as 4 years old. This childhood form of ALS is linked to the SPTLC1 gene, which is part of the body's fat-producing system and may be caused by changes in the way the body metabolizes fats called lipids.
Learn more about clinical trials
Clinical trials are studies that help us learn more about disorders and improve care. They can help connect patients with new and upcoming treatment options.
All types of volunteers are needed - those who are healthy or may be ill or have disease - of all ages, genders, races and ethnicities to ensure that the study results apply available to as many people as possible and the treatments will be safe and effective for everyone who uses them.
NINDS also supports the NIH NeuroBioBank, a collaborative effort involving several brain banks across the United States that provide investigators with tissue from people with neurological diseases and other disorders. Tissues from people with ALS are needed to allow scientists to further study the disorder. The goal is to increase the availability and accessibility of high-quality samples for research to understand the neurological basis of disease. Potential donors can start the application process by visiting Learn how to become a brain donor.
Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, is a rare neurological disease that affects motor neurons, the nerve cells in the brain and spinal cord that control voluntary muscle movement. Voluntary muscles are the muscles we choose to move to produce movements such as chewing, walking, and speaking. The disease is progressive, which means symptoms get worse over time. ALS cannot be cured and there are no effective treatments to reverse its progression.
ALS is a type of motor neuron disease. When motor neurons degenerate and die, they stop sending signals to the muscles, causing the muscles to weaken, begin to contract (muscle bundle) and atrophy (atrophy). Eventually, the brain loses the ability to initiate and control voluntary movements.
Initial symptoms include:
Muscle twitching in the arms, legs, shoulders, or tongue
Muscle cramps
Tight and stiff muscles (spasticity)
Muscle weakness affecting the arms, legs, neck or diaphragm
Difficulty chewing or swallowing
As the disease progresses, muscle weakness and atrophy spreads to other parts of your body. You can develop problems with:
People with ALS may not be able to stand or walk, get into bed or get up on their own, or use their hands and fingers. from (dysarthria)
Breathing (difficulty breathing); people with ALS eventually lose the ability to breathe on their own and have to rely on a ventilator
Weight maintenance and malnutrition
Muscle cramps and neuropathy (nerve damage or illness)
Anxiety and depression, because people with ALS are generally still able to reason, remember, understand, and perceive their gradual loss of function
Although uncommon, people with ALS can:
decision-making problems
develop some form of dementia over time
ALS does not affect your ability to taste, touch, smell or hear. Most people with ALS die of respiratory failure, usually within 3 to 5 years of the first symptoms appearing. However, about 10% of people with ALS survive for a decade or more.
Risk factors for ALS include:
Age—Although the disease can strike at any age, symptoms most commonly develop between the ages of 55 and 75.
Biological sex— Men are slightly more likely to have ALS. However, as people age, the sex difference disappears.
Race and ethnicity—Whites and non-Hispanics are most likely to get the disease, but ALS affects people of all races and ethnicities.
Some studies show that military veterans are about one and a half to two times more likely to develop ALS, although the reason for this is unclear. Possible risk factors for veterans include exposure to lead, pesticides, and other environmental toxins.
sporadic ALS and family
Almost all cases of ALS are considered sporadic. This means that the disease appears to be random, with no clearly associated risk factors and no family history of the disease. Although family members of people with sporadic ALS have a higher risk of developing the disease, the overall risk is very low and most will not develop ALS.
About 5-10% of all ALS cases are familial (also called hereditary or inherited). Mutations in more than a dozen genes have been found to cause familial ALS.
About 25-40% of all familial cases (and a small percentage of sporadic cases) are caused by a defect in the C9ORF72 gene, which makes a protein found in motor neurons neurons and neurons in the brain. Some people with this gene also develop a type of frontal lobe degeneration (FTD, a form of dementia) caused by atrophy of the temporal and frontal lobes of the brain.
Another 12-20% of familial cases are due to mutations in the SOD1 gene involved in the production of the copper-zinc enzyme superoxide dismutase 1.
In 2021, a team of scientists led by the NIH and the University of Translation Health Sciences-led Unification has announced that it has discovered a unique inherited form of ALS that affects children as young as 4 years old. This childhood form of ALS is linked to the SPTLC1 gene, which is part of the body's fat-producing system and may be caused by changes in the way the body metabolizes fats called lipids.
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