Today, February 29th, marks National Rare Disease Day. The theme for this year is Patient Voice and the slogan is 'Join us in making the voice of rare diseases heard'. National Rare Disease Day comes only once a year, but for those living with a rare disease they are aware every day.
Having a rare disease is difficult and the medical uncertainty is often a reality for those living with a rare disease and/or disorders. In the U.S. rare disease and disorders are defined as illnesses and conditions impacting 200,000 people or fewer across the country.
Rare disease day is a chance to recognize rare diseases and disorders worldwide that are far too often ignored. With this recognition comes the obligation to listen to those experiencing a rare diagnosis and learning how to be supportive of those who have a rare disorder or disease.
Living with a rare disease can feel hopeless, but it can also feel hopeful. Hopeless because you're stuck with something that often isn't curable and medication usually does little to nothing to provide relief. Hopeless because you are unable to do a lot of the same things that your peers are doing.
But hopefulness remains. Being hopeful that science will finally find cure or create preventative measures so others do not have to suffer. Being hopeful that one day you'll be able to at least feel better.
Personal
I've always had health issues and was sick all the time when I was little ad always complained about being in pain. My parents did everything short of contacting alien life for answers, yet we never received any.
At the beginning of 2015 I had to drop a college course because I couldn't stay awake, I eventually got in with a sleep doctor and found out that I have narcolepsy and cataplexy. Shortly after that diagnosis my family and I began to once again peruse finding what has been causing me to have chronic pain all of these years. Months later shortly after my 20th birthday in April I was diagnosed with mild Fibrodysplasia Ossificans Progressiva (FOP). Usually FOP is diagnosed early on in life and unfortunately I went so many years with doctors not taking my pain seriously. After being diagnosed I felt relieved to have answers, but I also felt scared and more alone than ever.
I had my wonderful family by my side, but I decided not to tell my friends because unfortunately I felt like they wouldn't care and I also just wanted to be normal. Even today the majority of my friends still do not know. I feel like this is the hardest part aside from symptoms for people with a rare disease, the loneliness. Often times people ignore other peoples pain, especially if they can't physically see it. And often people are in such denial that they don't remember that you still need support and need someone to talk to while going through this difficult time.
It's important for everyone to be aware of how rare diseases play a large role in peoples lives and how it's can affect their mental state. Be open, ask questions, give someone a shoulder to lean on when they need it.
I strongly recommend everyone to check out the 9 ways to support people with a rare disease over at Mashable.
Rare disease day is a chance to recognize rare diseases and disorders worldwide that are far too often ignored. With this recognition comes the obligation to listen to those experiencing a rare diagnosis and learning how to be supportive of those who have a rare disorder or disease.
Living with a rare disease can feel hopeless, but it can also feel hopeful. Hopeless because you're stuck with something that often isn't curable and medication usually does little to nothing to provide relief. Hopeless because you are unable to do a lot of the same things that your peers are doing.
But hopefulness remains. Being hopeful that science will finally find cure or create preventative measures so others do not have to suffer. Being hopeful that one day you'll be able to at least feel better.
Personal
I've always had health issues and was sick all the time when I was little ad always complained about being in pain. My parents did everything short of contacting alien life for answers, yet we never received any.
At the beginning of 2015 I had to drop a college course because I couldn't stay awake, I eventually got in with a sleep doctor and found out that I have narcolepsy and cataplexy. Shortly after that diagnosis my family and I began to once again peruse finding what has been causing me to have chronic pain all of these years. Months later shortly after my 20th birthday in April I was diagnosed with mild Fibrodysplasia Ossificans Progressiva (FOP). Usually FOP is diagnosed early on in life and unfortunately I went so many years with doctors not taking my pain seriously. After being diagnosed I felt relieved to have answers, but I also felt scared and more alone than ever.
I had my wonderful family by my side, but I decided not to tell my friends because unfortunately I felt like they wouldn't care and I also just wanted to be normal. Even today the majority of my friends still do not know. I feel like this is the hardest part aside from symptoms for people with a rare disease, the loneliness. Often times people ignore other peoples pain, especially if they can't physically see it. And often people are in such denial that they don't remember that you still need support and need someone to talk to while going through this difficult time.
It's important for everyone to be aware of how rare diseases play a large role in peoples lives and how it's can affect their mental state. Be open, ask questions, give someone a shoulder to lean on when they need it.
I strongly recommend everyone to check out the 9 ways to support people with a rare disease over at Mashable.
- NORD (National Organization of Rare Disease) - This website is packed with tons of info!
- List of Rare Diseases
- International Fibrodysplasia Ossificans Progressiva Association