February 28, 2017, is the 10th Annual World Rare Disease Day! A rare or orphan disease is a disease affecting less than 200,000 people, according to the National Organization for Rare Diseases (NORD). There are 7000 known rare diseases and 95% of them have no FDA approved treatment. Obtaining a diagnosis may take months, years, even decades, for some, and a diagnosis does not guarantee treatment or a cure.
I have 3 diseases that are officially designated as rare diseases by NORD (CRPS, EDS, and acquired torsion/generalized dystonia) with another couple "mystery" diagnoses that I hope to have a name for soon. My luck, they will be rare diseases as well, but we've ruled out the "horses".
Today the rare disease community and advocates want to make the world aware of these "zebras". While doctors are trained to think horses when they hear hoofbeats, there are still 30 million zebras in the U.S. alone! That's about 1 in 10 people, or 10% of the population. Fighting a rare disease (or any disease for that matter), demands incredible strength, perseverance, and determination to continue living the best possible life and achieving your goals. It's not easy, but with the help of supportive family, friends, and medical providers, it can be done! Whether you know it or not, there is probably someone around you everyday fighting a battle similar to the one I am describing.
#wwrd17 #NORD #rarediseaseday #globalgenes #icareaboutrare #CRPS #EDS #dystonia #undiagnosed #mysterydiagnosis
I know I'm like 10 days late in posting this but better late than never, right?
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!