Help us save 9 children with MPS in SA

Mucopolysaccharidoses are a group of metabolic disorders caused by the absence or malfunctioning of lysosomal enzymes needed to break down molecules.

Without treatment, it is life-limiting, progressive, with a poor quality of life.

People with a mucopolysaccharidosis disease either do not produce enough of one of the 11 enzymes required to break down these sugar chains into simpler molecules, or they produce enzymes that do not work properly. The result is permanent, progressive cellular damage which affects appearance, physical abilities, organ and system functioning, and, in most cases, mental development.

There are various subtypes of MPS, some of which no treatment exists. However, in South Africa, we presently have 9 patients with treatable forms of MPS (Hunters and Hurlers syndrome), yet only one child is being treated.

The main reason for decline in funding is due to the cost of the medication, which is very expensive. However, with treatment, these children can have a greatly improved quality of life, and function normaly in society. This is the only medication available for them, yet, our funders (medical aids and goverment) think it is fair to place a pricetag on these children, and have valued their lives as less than the cost of medication.

LETS VALUE THESE CHILDREN AT THEIR TRUE WORTH - PRICELESS!

Today is international MPS day - lets give these kids something to celebrate.

http://i.imgur.com/64ouWhI.jpg

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For more information please contact:

Rare Disease Society of SA

www.rarediseases.co.za

Rare Disease Society of South Africa    Contact the author of the petition