RARE DISEASE DAY:
To My Friends and Family:
I am writing to tell you about a special day that’s coming up soon. On the last day of February, millions of people around the world will be observing the second annual Rare Disease Day. This day is special to us as a family, because our youngest daughter, Audrey, was diagnosed with a rare disease when she was only four months old.
In the U.S., a disease is considered rare (or an orphan disease) if it affects fewer than 200,000 people. Some rare diseases, such as Lou Gehrig’s disease (ALS), are well known to the public. However, many others are not, and you can imagine the loneliness of having a disease that most people have never heard of, that has no treatment, and that is not even being studied by any medical researchers.
Pediatric Mastocytosis, which is the disease my daughter has, is considered one of these orphan diseases. There is no known cause of Mastocytosis and no cure, with treatment options only available for maintaining symptoms. Thankfully, I am a member of a support group, Mastokids, Inc., which is a non-profit organization aimed at providing support to families of children with Mastocytosis. It is with this network of friends and the support that they give that raising Audrey with a rare disease has been manageable, and enjoyable.
Nearly 30 million Americans (about 1 in 10) have rare diseases. Many rare diseases are serious and/or chronic. Many are life-threatening. Even so, people with rare diseases often have trouble accessing the medical or other services they need because those making the decisions are not familiar with their diseases. All of us know someone with a rare disease. I encourage you to visit the website of the National Organization for Rare Disorders (NORD) on or before February 28, 2009, to read about Rare Disease Day activities in the U.S. and the global Rare Disease Day website (
http://www.rarediseaseday.org/) to learn what’s being done around the world.
Mastokids, Inc. is pleased to be partnering with NORD this year, in an attempt to bring awareness not only to Mastocytosis that our children are affected by, but to many other rare disorders around the world. For further information on pediatric Mastocytosis and the work that we do to support our children, please visit
http://www.mastokids.org/.
Sincerely,
Amber Pittman
Board of Directors, Mastokids.Org
VP - Awareness
Support Research for Pediatric Mastocytosis!!!
Visit http://www.mastokids.org/ today!
I liked this picture of my mom with Audrey! (see that cupcake in Audrey's mouth?)
Madison got a new bike for her birthday!
Celebrating with mom, dad, and Audrey at Chuckie Cheese!
Madison and Audrey
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