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MPS Awareness Day is celebrated annually on May 15th. This yearly event is dedicated to raising awareness about Mucopolysaccharidosis (M.P.S) Disorder. Members of the M.P.S society works diligently to make people aware and educate others about the diagnosis, symptoms, and management of M.P.S on yearly basis. Mucopolysaccharidosis is genetic lysosomal storage disease that occurs when the body is unable to produce a specific enzyme. The absence of deficiency of this enzyme hinders cells from properly recycling waste, leading to the accumulation of material in cells throughout the body. There are more than 40 hereditary diseases related to M.P.S caused by a malfunction of lysosome organelles.
MPS Awareness Day 2024: History
Mucopolysaccharidosis (M.P.S.) is a collection of metabolic disorders resulting from the absence of specific enzymes necessary for breaking down sugar carbohydrates that contribute to the formation of bones, skin and connective tissues. Individuals with M.P.S do not produce sufficient enzymes to break down these sugar chains into simpler molecules or produce enzymes that function improperly. Consequently, this leads to permanent cell damage and impacts an individual’s physical appearance, organs and overall bodily functions.
There are various forms of M.P.S, and it is estimated that they occur in approximately one out of every 25,000 births. The initial description of this disorder was made in 1971 by Dr. Charles Hunter, who identified M.P.S Type ll. In 1919, Gertrud Hurler identified and described two cases similar to Hunter’s observations, which eventually led to the discovery of Hurler and Hunter Syndrome. In 1968, these diseases were recognized as being the same, with Hunter Syndrome being considered a less severe variant of Hurler Syndrome. However, in 1978, Lorincz published a study distinguishing both diseases as separate disorders. It was only in 1968 that the hypothesis of poor mucopolysaccharide breakdown as the cause of these disorders emerged.
Currently, there are seven distinct clinical types of Mucopolysaccharidoses, along with numerous subtypes. Although each case of M.P.S presents differently, most patients experience a period of normal development followed by a decline in physical or mental function. Depending on the specific type of M.P.S., individuals may encounter cognitive deficits, developmental delays, or severe behavioral issues. Many people also suffer from hearing loss, neurosensory damage, or a combination of both. Unfortunately, there is no cure for these disorders, and the treatment primarily focuses on enhancing the individual’s quality of life.
How to Celebrate MPS Awareness Day?
Volunteer
Explore the M.P.S. Society website and submit an application for any of the numerous volunteering opportunities in your locality. You can also tell your friends and family to participate in the activity as well. The greater the number of volunteers, the more enjoyable the experience!
Donate
Contributing to M.P.S. community can have a significant impact. Show your support for M.P.S. Awareness Day by making donations to organizations associated with M.P.S. research and advocacy.
Raise awareness on social media
Join the festivities by raising awareness on social media. Share valuable information about M.P.S. and utilize the relevant hashtags.
Why is it Important to Celebrate MPS Awareness Day?
M.P.S Awareness Day focuses on people who lost their lives to M.P.S. disorder. M.P.S. Awareness Day serves as a meaningful occasion to honor and remember these individuals. Additionally, this day also supports those who are currently battling with M.P.S. disorder.
M.P.S. Awareness Day plays a crucial role in spreading awareness on a global scale. It fosters collaboration in research and education surrounding M.P.S., ultimately leading to a greater understanding of the condition.
M.P.S. Awareness Day brings people together, creating a sense of community for friends and families who have been affected by M.P.S. This platform allows individuals to share their personal stories, providing support and encouragement to one another.
5 Unknown Facts About MPS
- It is genetic: M.P.S is a genetic disorder that is inherited.
- The intensity differs:The intensity of syndromes associated with M.P.S. varies among individuals.
- M.P.S. Vll:M.P.S. VII, also known as sly syndrome, is the latest prevalent form of M.P.S.
- Diagnosis through urine test: M.P.S can be diagnosed by examining Mucopolysaccharidosis in urine during a clinical examination.
- Enzyme replacement therapy: Enzyme replacement therapy is utilized as a treatment for M.P.S. to alleviate non-neurological pain and symptoms.
