Rare Disease Day is Feb. 29th. An easy thing you can do to make people aware of Dercum's Disease is write a letter to the editor of your local paper to be posted that day. You can usually find the address on the editorial page or online at your paper's site. Every letter that is published will be read by many and help to spread the word! Don't stop with your local paper - contact as many as you can!
If you need an example to give you ideas of what to say, I will include one below. It's the one I've used for the last two years. Feel free to modify it for yourself. Let's get the word out!!
Rare Disease Day is February 29
I would like to let readers know that today is a special day - a day used in many countries around the world to focus on rare diseases as a public health issue.
Nearly 30 million Americans (about 1 in 10) have rare diseases. Chances are you know someone with a rare disease. In the U.S., a disease is considered rare if it affects fewer than 200,000 people.
Some rare diseases, such as Lou Gehrig's disease (ALS), are well known. 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.
I have Dercum's Disease -- a disease that is often disabling and painful. It was discovered more than 110 years ago, yet it still has no identified cause or cure and almost no research is being done. I cohost a blog at curedercums.blogspot.com where we share information with other Dercum's patients about how to learn to live with our changing bodies along with the lack of doctors who are familiar with Dercum's and the frustration over not knowing what might help us.
Like us, people with rare diseases often have trouble accessing the services they need because those making the decisions are not familiar with their diseases. Spreading information is the key to future help.
I encourage you to visit the U.S. Rare Disease Day Web site at www.rarediseaseday.us and help me spread the word.
THE MYTH: Only overweight, postmenopausal women have Dercum's Disease. THE TRUTH: Anyone can have it. Both men and women have been diagnosed with DD. A person with Dercum's is not necessarily overweight and some patients have developed symptoms as early as their adolescent years. If you have painful lumps, you may have Dercum's Disease.
