International MPS Awareness Day Date in the current year: May 15, 2024

Mucopolysaccharidoses are a group of rare genetic diseases caused by the malfunctioning or complete absence of enzymes that break down molecules called glycosaminoglycans (GAGs), formerly known as mucopolysaccharides.

GAGs play an important biological role in the body. They help build bones, connective tissue, cartilage, corneas, skin, and tendons. GAGs are also present in synovial fluid that lubricates the joints and reduces friction. Probably the best-known example of GAG is hyaluronic acid. However, when GAGs are not broken down into simpler molecules once they’ve performed their function, they accumulate in the cells and cause permanent, progressive cellular damage.

Mucopolysaccharidosis (MPS) is an umbrella term for over 40 genetic disorders that result from the deficiency of lyposomal enzymes responsible for GAG metabolism. They are divided into seven distinct types depending on the deficient enzyme; each type has several subtypes.

The signs and symptoms of MPS may vary depending on the MPS subtype and the organs and systems affected. Some MPS patients have normal intellect, while others may have cognitive impairments or behavioral problems, or experience developmental delay. Many people affected by MPS suffer from neurosensory issues, hearing loss, vision impairment, or a combination thereof. MPS can also affect the bones and joints, heart, and respiratory system. The severity of MPS disorders can rage from mild to extremely severe, but all of them are progressive, meaning they worsen over time if untreated.

Like with many rare disorders, there is no cure for MPS. Treatments focus on reducing specific symptoms and improving the patient’s quality of life. They may include regular exercise and physical therapy to delay the development of joint problems, dietary changes to decrease mucus production, surgery for problems like sleep apnea, hernias, corneal clouding and others, enzyme replacement therapy for reducing pain and non-neurological symptoms, and more.

International MPS Awareness Day, also referred to as simply MPS Awareness Day, was started in the United States in 2006 and has since become a global awareness campaign. It is coordinated by the National MPS Society and the International MPS Network that unites MPS organizations from around the globe. The main goals of the awareness day are to honor patients affected by MPS and their caregivers, and to improve MPS awareness and access to treatment globally.

There are many ways to observe International MPS Awareness Day. You can learn more about MPS and share the facts you’ve learned with others, participate in an MPS Awareness Day event near you, join a virtual event/awareness campaign or even organize an event of your own, donate to or volunteer for a charity that supports MPS patients and their families or funds MPS research, and spread the word on social media with the hashtags #InternationalMPSAwarenessDay and #MPSAwareness Day.

If your family has been affected by MPS, consider sharing your story to help raise awareness of MPS, show MPS patients and their caregivers around the globe that they are not alone, and give them hope for a better quality of life.