Who is the longest-living ALS survivor?

And, when that day finally came on March 14, the day Stephen Hawking passed and Canadian Steve Wells became the longest surviving person with ALS, Wells woke with a simple, “Oh,” and went back to sleep.

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Who lived for 50 years with ALS?

Dr. Hawking became a professor at the University of Cambridge in England. Although his life was expected by some physicians to be short, he died at the age of 76 after living for more than 50 years with ALS. He published many articles and several books on theoretical physics and the Big Bang theory.

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What is the longest anyone has ever lived with ALS?

Amyotrophic lateral sclerosis or ALS is one of several types of motor neurone diseases. It gradually and inexorably paralyzes patients, usually killing within about four years. Hawking was diagnosed in 1963, when he was just 21 years old. He survived for 55 years with the incurable condition.

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Has anyone ever fully recovered from ALS?

ALS is fatal. The average life expectancy after diagnosis is two to five years, but some patients may live for years or even decades. (The famous physicist Stephen Hawking, for example, lived for more than 50 years after he was diagnosed.) There is no known cure to stop or reverse ALS.

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Why do some people with ALS live longer?

People with ALS who use an assisted-breathing device usually have increased life expectancy and may have better quality of life. Longer life expectancy is also likely for people with ALS who use a feeding tube known as a PEG tube, since nutrition plays a critical role in extending survival.

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Leah's ALS Story

19 related questions found

How close are we to a cure for ALS?

At present, there is no cure for ALS. However, there are several treatment options, including stem cell therapy, Riluzole, occupational therapy, and gene therapy, which may help manage symptoms and slow the progression of the disease, as well as ongoing research for potential cures and treatments.

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Why is ALS becoming more common?

The rates of ALS seem to be increasing slightly, although it's hard to say why; part of the reason is thought to be that people are simply living longer, and that doctors are getting better at diagnosing it.

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Can ALS be put in remission?

Our study showed that ALS plateaus and small brief reversals are not uncommon. On the other hand, large reversals lasting a long time are rare; less than 1% of more than 1000 eligible PRO-ACT participants had an ALS Functional Rating Scale-Revised (ALSFRS-R) improvement of at least four points lasting at least a year.

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What are 3 things that can lead to ALS?

Established risk factors for ALS include:
  • Genetics. For about 10% of people with ALS , a risk gene was passed down from a family member. This is called hereditary ALS . ...
  • Age. Risk increases with age up to age 75. ...
  • Sex. Before the age of 65, slightly more men than women develop ALS .

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Is there hope for ALS patients?

Just one drug, riluzole, is approved for ALS care, and it is of modest value, helping patients live for five or six extra months. Is there any hope on the horizon that this state of affairs might change at last? The short answer is yes. There is a palpable sense of hope in ALS science circles these days.

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Which celebrity has ALS?

Who Gets ALS?
  • Baseball great Lou Gehrig.
  • Theoretical physicist, cosmologist and author Stephen Hawking.
  • Hall of Fame pitcher Jim "Catfish" Hunter.
  • U.S. Senator Jacob Javits.
  • Actor David Niven.
  • "SpongeBob SquarePants" creator Stephen Hillenburg.
  • “Sesame Street” creator Jon Stone.
  • Jazz musician Charles Mingus.

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What ultimately kills ALS patients?

ALS doesn't affect your ability to taste, touch, or smell, or hear. Most people with ALS die from respiratory failure, usually within three to five years from when the symptoms first appear.

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Is ALS painful at the end?

Excessive pain is not a concern for many ALS patients, but muscle spasms and joint stiffness is often an issue. Through pain relief medication, therapies and other care methods, hospice teams can help keep pain at a tolerable level.

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Who is the youngest ALS victim?

— A year ago, eight-year-old Kennedy Arney was diagnosed with juvenile ALS. Just seven at the time, she became the youngest person diagnosed with the illness in the United States. "It was actually a mutation in my DNA, because there's no family history in my family with ALS," she explained.

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What percentage of ALS runs in the family?

About 90 to 95 percent of ALS cases are sporadic, which means they are not inherited. An estimated 5 to 10 percent of ALS is familial and caused by mutations in one of several genes. The pattern of inheritance varies depending on the gene involved.

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What slows progression of ALS?

Boston, MA—Consuming omega-3 fatty acids—particularly alpha-linolenic acid (ALA), a nutrient found in foods including flaxseeds, walnuts, and chia, canola, and soybean oils—may help slow the progression of disease in patients with amyotrophic lateral sclerosis (ALS), according to a new study led by Harvard T.H. Chan ...

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Why is ALS so rare?

There is a uniqueness in care management, time effectiveness, and determination of quality of life for ALS patients. The distinctiveness of those aspects makes ALS all the rarer. National and world-wide organizations will be promoting forums and events to raise awareness of rare diseases in our population.

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Who is more common to get ALS?

ALS is more common in men than women. ALS is age related; most people find out they have it when they are between 55 and 75 years of age, and live from 2 to 5 years after symptoms develop. How long a person lives with ALS seems to be related to age; people who are younger when the illness starts live slightly longer.

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Does ALS run in families?

Most of the time ALS is not inherited. In about 90% of cases, the person diagnosed is the only member of the family with the disease. These cases are called “sporadic ALS”. The cause of sporadic ALS is not well understood, but may be due to a combination of environmental and genetic risk factors.

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What foods should be avoided with ALS?

There is no official list of foods to avoid for ALS patients. Some research suggests that milk, pork, and luncheon meats could negatively affect ALS function. Additionally, since patients may be taking medications, alcohol intake is not recommended.

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How long can you have ALS without knowing?

And you're right; it takes on average about nine to 12 months for someone to be diagnosed with ALS, from the time they first began to notice symptoms. Getting the proper evaluation in a timely way is important, especially since we have a drug, Rilutek, which has been shown to help delay the progression of ALS.

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How fast do you deteriorate with ALS?

The speed at which amyotrophic lateral sclerosis (ALS) progresses can vary a lot from person to person, but typically the disease progresses quite rapidly. Most patients reach the late stage of ALS within two to three years after symptom onset, and the average survival time is about two to five years from onset.

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Why do athletes seem to get ALS?

Conclusions: Our review suggests that increased susceptibility to ALS is significantly and independently associated with 2 factors: professional sports and sports prone to repetitive concussive head and cervical spinal trauma. Their combination resulted in an additive effect, further increasing this association to ALS.

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What professions are linked to ALS?

In a recent study, some occupations were identified as having an increased risk of developing ALS, such as precision-tool manufacturing, glass, pottery and tile work, exposure to formaldehyde.

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What is the odd of getting ALS?

Approximately 5,000 people in the U.S. are diagnosed with ALS each year. The incidence of ALS is two per 100,000 people, and it is estimated that at least 16,000 Americans may be living with ALS at any given time. About 90 percent of ALS cases occur without family history.

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