28 Sep, 2014
Posted by julie @ 11:56 am
How can a disease be considered as rare?
Here are a few facts about rare diseases:
- There are about 6,000 to 8,000 rare diseases and three-fourths of these affect children.
- According to the World Health Organization, a rare disease has a prevalence of 0.65 to 1%.
- A third of those afflicted with rare diseases die before reaching age 5.
- Most of these rare diseases have genetic origins while the rest are results of bacterial or viral infections, allergies and environmental causes.
- Rare diseases are often degenerative, chronic, progressive and life-threatening.
- In the Philippines, when one patient in every 20,000 is affected by a certain medical condition, this is considered rare.
- Patients afflicted with rare diseases often have their quality of life reduced to taking medications, check-ups and suffering from pain.
- They are often dependent on other people to attend to their basic needs. They also need lifelong medical care, food supplements, medications and multidisciplinary therapies to alleviate the symptoms and effects of the disease.
- The family dynamics of the person with a rare disease is also affected due to intensive care that the patient needs to have the condition improved and to prolong lifespan.
Some of the rare diseases that patients in the Philippines have been diagnosed with are the following:
- Blue Rubber Bleb Nevus Syndrome
- Rett Syndrome
- Muscular Dystrophy
- Maple Syrup Urine Disease or MSUD
- Biliary Atresia