The story of Diane
I will probably never meet another human with my disease. Only 3 out of every 1 million people get it. But, I will meet another with some form of a rare disease. Rare disease day is recognizing the fight that all of us who have a rare disease must fight alone, yet we are not alone. If you combine all of us “odd ducks” together, we are surrounded by others like us. There are so many problems that all of us with rare diseases face that those that go to the doctor a few time a year with a case of strep throat or some other common ailment may never realize. Problems like going to doctors who have literally never heard of your disease, but then worse, pretend they have. Fighting insurance companies because there is literally no drug that is “approved” to treat your condition. Fighting legislature designed to protect people from pharmaceutical companies, but would literally make it impossible for any new drug to be tried on a person with a rare disease, even though none have been found to cure it. Dealing daily with the pain and effects of the disease and the huge number of side effects the drugs to try to treat it cause. Having a disease that doesn’t make you look sick, but you feel sick every day to different degrees. Spending a huge percentage of your income on medical bills, and staring uncertainty in the face every single day. Seeing ads and campaigns promising research into cancer and other known illnesses, and knowing no one is researching a cure for your disease because it does not affect enough people for anyone to care about a cure. For these reasons and more, I support rare disease day 2016. I am learning not to hide or be ashamed that I have Relapsing Polychondritis and the fact that it affects every single day of my life. On February 29th I will join with others “like me” to bring awareness to the plight of those who struggle with a rare disease. Thank you for all who read this long ramble. 🙂