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International MPS Awareness Day – May 15, 2023

International M.P.S. Awareness Day is celebrated annually on May 15. This annual celebration serves as a means to spread awareness of Mucopolysaccharidosis (M.P.S.) Disorders. M.P.S. society members do their best to educate and create awareness about the diagnosis, symptoms, and management of M.P.S. each year. Mucopolysaccharidosis is a genetic lysosomal storage disease caused by the body’s inability to produce a specific enzyme. The missing or insufficient enzyme prevents cells from recycling waste, resulting in the storage of materials in cells throughout the body. M.P.S. has over 40 hereditary illnesses caused by a failure of the lysosome organelles.

History of International MPS Awareness Day

Mucopolysaccharidosis (M.P.S.) is a group of metabolic disorders caused by the lack of specific enzymes required to break down sugar carbohydrates that aid in bone, skin, and connective tissue building. Individuals with M.P.S. fail to produce enough enzymes needed to break down these sugar chains into simpler molecules or produce enzymes that do not work properly. This results in permanent damage to cells and affects an individual’s physical appearance, organs, and system functioning.

There are many forms of M.P.S., and their prevalence is estimated to be one in 25,000 births. The first description of the disorder was made in 1917 by Dr. Charles Hunter, who identified M.P.S. Type II. By 1919 Gertrud Hurler identified and described two cases similar to Hunter’s observation, and her findings led to the Hurler and Hunter Syndrome discovery. The diseases were considered to be the same in 1968. In that same year, the Hunter Syndrome was considered a less severe variant of the Hurler syndrome. By 1978, Lorincz released a publication distinguishing both diseases as two separate disorders. It was only in 1968, that the disorders were hypothesized to be due to poor mucopolysaccharide breakdown.

In present times, seven distinct clinical types, and numerous subtypes, of mucopolysaccharidoses have been identified. Although each case of M.P.S. is clinically different, most patients have a period of normal development followed by a decrease in physical or mental function. Depending on the M.P.S. type, individuals may experience cognitive deficits, developmental delays, or severe behavioral issues. Many people suffer from hearing loss, neurosensory damage, or both. Unfortunately, there is no cure for these disorders, the treatment utilized is aimed at improving the individual’s quality of life.

International MPS Awareness Day timeline

1917
Hunter Syndrome

The first description of M.P.S., discovered by Dr. Charles Hunter, is named “Hunter Syndrome.”

1919
Hurler Syndrome

Gertrud Hurler identifies and describes symptoms similar to the conditions identified in Hunter Syndrome.

1952
M.P.S. Discovery

The Hurler and Hunter Syndromes are identified as a buildup of mucopolysaccharidoses.

1974
The National M.P.S. Society

The National M.P.S. Society is founded to promote patient advocacy, genetic counseling, and other services to M.P.S. patients and families.

International MPS Awareness Day FAQs

What is the life expectancy of an M.P.S. patient

The life expectancy of an M.P.S. patient is between 10 to 20 years.

Where does M.P.S. come from?

Mucopolysaccharides are long chains of sugar molecules that are often found in mucus and fluids around the joints of the body.

What is Sanfilippo Syndrome?

Sanfilippo Syndrome is a Type III M.P.S. disorder. It is a rare autosomal recessive lysosomal storage disease that primarily affects the brain and spinal cord.

How to Observe International MPS Awareness Day

  1. Volunteer

    Visit the M.P.S. Society website and apply for one of the many available volunteering opportunities in your area. Get your friends and family involved in the process. The more the merrier!

  2. Make donations

    Giving back to your community can go a long way! You can join in the observation of M.P.S. Awareness Day by making donations to organizations affiliated with M.P.S. research and advocacy.

  3. Spread awareness on social media

    Share in the celebration by spreading awareness on social media. Share information about M.P.S. and use the appropriate tags.

5 Interesting Facts About M.P.S.

  1. It is genetically inherited

    M.P.S. is a hereditary genetic disorder.

  2. Its severity varies

    The severity of M.P.S. symptoms varies in individuals.

  3. M.P.S. VII

    M.P.S. VII, or sly syndrome, is the least common type of M.P.S.

  4. Urine test diagnosis

    M.P.S. can be diagnosed from clinical examination of Mucopolysaccharidosis in urine.

  5. Enzyme replacement therapy

    Enzyme replacement therapy is used as a treatment for M.P.S. to reduce non-neurological pain and symptoms.

Why International MPS Awareness Day is Important

  1. We love to care

    We care about those who have lost their lives to M.P.S. M.P.S. Awareness Day allows for the remembrance of people with M.P.S. disorder who have passed away over the years. We also stand with those who are currently suffering from M.P.S.

  2. Spreads Awareness

    M.P.S. Awareness Day aids in raising global awareness about the condition. It also promotes collaboration in research and education on M.P.S.

  3. Creates Community

    M.P.S. Awareness day creates a community for friends and families whose loved ones have M.P.S. Communities can come together to share their stories for support and encouragement.

International MPS Awareness Day dates

YearDateDay
2023May 15Monday
2024May 15Wednesday
2025May 15Thursday
2026May 15Friday
2027May 15Saturday

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