World Rare Disease Day

Dear Editor and Palos Patch Readers:

February 29 is the rarest day on the calendar, and I invite the Palos Patch readership to do something meaningful to mark the day.

On the last day of February, millions of people around the world observe Rare Disease Day®. Each of us knows someone with a rare disease or disorder. In 2009, my niece has been diagnosed with Leukodystrophy known as vanishing white matter disease (VWM). To learn more about VWM see: https://hreskaa.wordpress.com/2013/05/08/vanishing-white-matter-and-research/ To help us spread awareness while searching to find a cure for vwm see : https://www.facebook.com/findacureforvwm/

In our country, rare diseases affect 1 in 10 people. The 7,000 known rare diseases combine to affect 30 million people, making them not so rare after all. Approximately 50% of people affected by rare diseases are children, and 30% of children with rare diseases do not live to see their 5th birthday. In fact, rare diseases are responsible for 35% of deaths in the first year of life.

Families often have trouble getting access to life-saving medical treatment or other services because their insurance, medical, elected and other officials may not be familiar with their diseases.

Some, such as cancer (most types of cancer are rare) and Lou Gehrig’s disease (ALS), are well known to the public. Many others are not, and you can imagine the loneliness of having a disease most people have never heard of, has no treatment, and is not even being studied by medical researchers.

Raising public awareness truly makes a difference. It gives families hope and can lead to new, life-saving treatments. I encourage everyone reading this to get involved by visiting the U.S. website (www.rarediseaseday.us) on or before February 29 to learn about events in your area and what you can do to support individuals and families impacted by rare diseases.

Sincerely,

Donna Skwirut