The MPS is an abbreviation of mucopolysaccharidosis, a rare hereditary metabolic disease. It means that a person is born with a lack or reduction of enzymes that digest the glycosaminoglycans, formerly called mucopolysaccharides.
Because it is unknown even among health professionals, the proper assessment to be made immediately or who need the treatment takes to receive it.
The diagnosis is usually done by a geneticist, after referral by another physician. To confirm the disease, carried out a blood test to identify the absence or reduction of enzymes.
Treatment involves a team with many professionals, because the disease affects multiple organs. The ideal is to look for centers that care for genetic diseases. Currently there are seven known types of MPS.
Types of MPS
MPS I - Hurler syndrome / Hurler-Scheie / Scheie
MPS II - Hunter Syndrome
MPS III - Sanfilippo Syndrome
MPS IV - Morquio syndrome
MPS VI - Maroteaux-Lamy Syndrome
MPS VII - Sly Syndrome
There is only treatment for types 1, 2 and 6, done by enzyme replacement therapy indefinitely. In Brazil, enrolled 520 patients, one of the highest population of MPS in the world.
All information was collected through the Edward Prosper, 21, who is a carrier of MPS type VI. Dudu blog owner and friends, he seeks to disseminate information to save lives and has been a source of hope for many people.
From mother to mother - What a mother should do so he discovers that the child is MPS?
If the type of treatment has diagnosed MPS (I, II or VI) and the child is an indication of it, should immediately contact us (www.apmps.org.br). If the place where she has lived association will forward it. If not, we will get guidance on how the medication, which must be subsidized by the federal government. Unfortunately, the high cost, no family would buy Brazil - Regina tells Prospero, Dudu's mother.
Cost of the drug and possible inclusion in the SUS
When Regina speaks in high-cost medicine, it refers to a cost about 50 thousand per month, noting that depends on the patient's weight, since the medication is calculated per ml / kg.
But they suffer from constant lack of dispensation and even have patients who have been three months without pay. Sometimes the government provides for one month and two months is not available. Because treatment is continuous, committed to improving the range already achieved.
This year, they've had three major flaws in the receipt, the last general - had no medicine to anyone.
Applications abound and date back to 2003, when no estimate for when the situation normalizes. But thanks to the Internet, you can help them to have guaranteed access to the medicine. How?
1. I Want to Live The Institute must obtain signatures to include drugs for treatment of MPSS on the list of high cost of the Unified Health System (SUS).
2. So far 11,564 people have signed, but we need 1 million signatures.
3. To contribute, you simply send your and help spread. Subscribe here.
Dudu wants to show it is possible to lead a normal life, without major limitations. And sharing this information we can help you achieve this goal.