What does February 28 mean to you?
What does this day mean to you? It may be your birthday; it can be your parents’ anniversary; or your most awaited pay day; or it can also be just another day in the calendar, but to me and to over 300 million people worldwide, February 28 is a very special day. It’s World Rare Disease Day!
According to the Philippine Society for Orphan Disorders: In the Philippines, persons born with and afflicted with rare or orphan disorders are a vulnerable and special population. A disease or disorder is considered rare if it affects 1 in 20,000 individuals or less, as defined by the Institute of Human Genetics of the National Institutes of Health, University of the Philippines Manila.
- There are 6,000-8,000 rare diseases
- 75% of rare diseases affect children
- 30% of rare disease patients die before the age of 5
- 80% of rare diseases have identified genetic origins
- Other rare diseases are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative
“Common” characteristics of rare diseases
- Rare diseases are often chronic, progressive, degenerative, and life-threatening
- Rare diseases are disabling: the quality of life of patients is often compromised by the lack or loss of autonomy
- High level of pain and suffering for the patient and his/her family
- No existing effective cure for most rare disease
Today is a day to pay homage to these amazing people and their families who are heroes in their own right. I am really blessed to have met some of them through the Volunteer Youth Leaders for Health Philippines. It is really awesome to meet people who, despite their condition, have extraordinary zest for life. I am forever proud to say, I love someone who is rare!
In celebration of this wonderful day, join me in lighting a candle and saying a prayer for the children who have succumbed to their rare disease and for those who are gravely battling their condition. From now on, I hope that February 28 will be a special day for you too!