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May11–17

Huntington's Disease Awareness Week – May 11-17, 2023

Each year in the U.K., a date is set to celebrate Huntington’s Disease Awareness Week and this year it will be marked from May 11 to 17. Huntington’s disease is a hereditary, degenerative disease affecting brain cells, leading to uncontrolled body movements and progressive dementia. The disease gets its name from George Huntington, an American physician who was the first to describe it fully.

History of Huntington's Disease Awareness Week

According to MedlinePlus, Huntington’s disease is “a progressive brain disorder that causes uncontrolled movements, emotional problems, and loss of thinking ability (cognition).”

The history of Huntington’s is traceable to 1872 when George Huntington gave a complete description of the disease based on his studies of residents of East Hampton, Long Island, U.S. He studied several generations of one family and found the same symptoms. Before this, several medical experts had noted the disease’s symptoms but could not give a complete description. As a result of the U.S. — Venezuela Huntington’s Disease Collaborative Research Project, the approximate location of a causal gene was discovered in 1983.

The disease could occur in childhood or the adult stage of a patient’s life. Adult-onset Huntington’s usually begins manifesting during a patient’s thirties or forties. Symptoms of the disease include irritability, small involuntary movements, depression, poor coordination, and difficulty walking, sleeping, swallowing, learning, or making decisions. It may also manifest itself in uncontrollable jerking or twitching movements known as ‘chorea.’ In children, Huntington’s disease presents the same symptoms but also includes slurred speech, slow movements, clumsiness, rigidity, drooling, and frequent falling. While juvenile patients live 10 to 15 years after symptoms appear, adult patients can live as long as 15 to 20 years after the onset of the disease.

Huntington's Disease Awareness Week timeline

1872
The Disease is Described

George Huntington gives a complete description of Huntington’s disease.

1971
The H.D.A. is Founded

The Huntington’s Disease Association is founded as the U.K. Committee to Combat Huntington’s Disease.

1983
More Discoveries are Made

The approximate location of a causal gene for Huntington’s is discovered by the U.S.-Venezuela Huntington’s Disease Collaborative Research Project.

2019
Huntington’s Disease Awareness Month is Created

Huntington’s Disease Awareness Week is expanded to Huntington’s Disease Awareness Month.

Huntington's Disease Awareness Week FAQs

Is Huntington’s disease curable?

Unfortunately, no cure for Huntington’s exists, but symptoms can be treated with medication.

Who is the president of the H.D.A.?

Cath Stanley is the Chief Executive of the Huntington’s Disease Association.

How many people have Huntington’s disease in the United Kingdom?

As of 2010, about 6,700 people living with Huntington’s disease in the U.K.

How to Observe Huntington's Disease Awareness Week

  1. Spread awareness

    The whole point of Huntington’s Disease Awareness Week is to raise awareness about the disease. Celebrate by spreading the word through posters, online campaigns, and word of mouth to help more people learn about Huntington’s.

  2. Fundraise in aid of people living with the disease

    Join or start a fundraiser to raise money for Huntington patients. Donations go a long way in providing the association with the monetary support they need to treat patients properly.

  3. Support the cause

    Celebrate by pledging to support patients of Huntington’s disease in any way you can. Whether it’s by bringing them flowers to cheer up their day or being a listening ear when they’re down, support these brave individuals.

5 Important Facts About Huntington's Disease

  1. Huntington’s is hereditary

    If a person has Huntington’s disease, their children have a 50% chance of inheriting it.

  2. Pre-pregnancy planning is possible

    People with the mutated Huntington’s gene or the disease can prevent their children from having it through pre-implantation genetic testing and in vitro fertilization (I.V.F.).

  3. Genetic testing is important

    A person can determine if they have the mutated Huntington gene by undergoing a genetic test.

  4. Medication is available for symptoms

    Symptoms of Huntington’s can be mitigated with medications, alongside physical, speech, and occupational therapy.

  5. Huntington’s affects mental health

    Counseling and support groups are important as people with Huntington’s tend to develop symptoms of depression.

Why Huntington's Disease Awareness Week is Important

  1. Creation of awareness is important

    Many people are still unaware of Huntington’s disease and how it affects the lives of patients and their families. This week ensures that more people learn about the condition and how to provide support to patients.

  2. Early detection is ensured

    It's important to get a diagnosis early. This holiday encourages people to go for routine check-ups in order to get diagnosed earlier.

  3. Funds are raised

    This awareness week reminds and encourages people to donate money to treat Huntington’s patients. The funds are often used to pay for telephone support for someone at a crisis point, sponsor a patient to attend a social activity, or provide welfare grants to patients.

Huntington's Disease Awareness Week dates

YearDateDay
2023May 11Thursday
2024May 11Saturday
2025May 11Sunday
2026May 11Monday
2027May 11Tuesday

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