Posts Tagged ‘Progeria’

Orphan Disorder

The Philippines, being a tropical country, is susceptible to rare diseases. According to Microsoft Student, tropical diseases, or diseases found in tropical countries are almost exclusive and most of the time, rare. The spread of these diseases are mostly attributed to climate, poverty, and primitive sanitation conditions.

Malaria is one of the diseases common in tropical countries. It is a single-celled parasite transmitted by anopheles mosquitoes from one person to another in their bites. The disease causes chills and high fever and can lead to death if left untreated. Millions of die each year because of malaria.

However, there are some cases wherein rare diseases affect people from tropical countries. These health conditions result from genetic defects affect around 1 in every 20,000 individuals in the population. Some rare diseases that affect tropical countries like the Philippines are Phenylketonuria, Gaucher Disease, Hunter-Hurler Syndrome and other enzyme-based fat and sugar metabolism diseases.

Phenylketonuria or PKU is a hereditary disease in newborns wherein there is an accumulation of phenylalanine in an affected child’s blood shortly after birth. It can result to mental retardation if not treated early. In the Philippines, a newborn screening is given to diagnose if the infants have this disorder. Affected children can develop normally once detected early, with the help of a strict diet that limits phenylalanine. Another rare disease is progeria. It makes children develop rapidly with symptoms of old age and usually die because of coronary disease by their early teens.

Senator Edgardo J. Angara filed Senate Bill No. 3087 or Rare Diseases Act of the Philippines. The long title of this bill is

An act to help persons afflicted with rare diseases by creating an office of rare diseases in the Department of Health,encouraging the conduct of research and development activities on rare diseases, and providing for fiscal and regulatory incentives for the manufacture or importation of healthcare products for use by such persons.

The bill seeks to help patients, particularly children with rare diseases (sometimes called “orphan disorder“) by providing them better access to medical/health care, information campaign, and medicines needed to treat their condition. I don’t know if this is a part of the priority bills of the Aquino administration, but I think it’s not. The bill was filed on February 23, 2009 and has been pending ever since. :(

Please help support the Rare Diseases Act of the Philippines by visiting website of the Philippine Society for Orphan Disorders and sign the petition.

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