What Is Rare Disease Day?Rare Disease Day 2021 is coming soon, and we are excited! This is a huge day for people who suffer from rare diseases. It’s also an important day for people who do not have a rare disease but know someone who does. Find out more about why this day is so important and what you can do to participate!
Rare Disease Day was created by EURORDIS (Rare Diseases Europe) in 2008, and it is recognized all over the world. In the US, a rare disease is any disease affecting fewer than 200,000 people. Since February 29th is the rarest day of the year, Rare Disease Day occurs on February 29th in every leap year, and February 28th in other years.
The purpose of this day is to spread awareness of rare diseases so that rare disease sufferers can benefit in a variety of ways. People who have rare diseases need medical care from doctors who understand what is happening in their bodies. They also need cures and treatments to be discovered, which means that researchers have to have funding. One more thing people with rare diseases need is support from people who genuinely care about them. Rare Disease Day is about providing all of these things and more!
Did you know that rare diseases affect more than 350 million people worldwide?Learn more facts about rare diseases in this quick video:
One big obstacle many rare disease sufferers face is that doctors don’t always know how to help them. There’s a saying that goes, “When you hear hooves, think horses, not zebras.” This metaphor describes the way a lot of doctors think. They see a patient with mysterious symptoms, and they assume the disease is something that’s common a “horse.” A rare disease is the “zebra” that doctors aren’t thinking about. This results in rare disease sufferers getting misdiagnosed and not receiving the right kind of care.
But people with rare diseases are resilient, and they don’t give up. Rare Disease Day is a celebration of them and their journeys. Many organizations around the world participate in Rare Disease Day, including the Periodic Paralysis Association. Our mission is to support and empower people who have periodic paralysis. That’s why this day is so special to us.
What is Periodic Paralysis?
Periodic paralysis is a term that describes a group of genetic disorders that cause episodes of muscle weakness or paralysis. These episodes can last for several minutes, hours, or even days. There are multiple things that can trigger an episode, such as resting after exercise, awakening from sleep, eating certain foods, or being in a cold environment.
Living with this disorder can be challenging and frightening. People with periodic paralysis have family, friends, jobs, and hobbies, just like everyone else — but they often have trouble living their lives the way they want, because they’re worried about their next paralysis attack. One periodic paralysis patient, Monica, describes what it feels like to suddenly have extreme muscle weakness: “I could barely get out of bed to go to the bathroom. I could barely hold a cup.”
Most people can go through their day without having to worry about things like this. But for people like Monica, periodic paralysis can have a significant impact on every part of life. It’s disheartening when you want to do something but your own body stops you from doing it.
To make matters worse, it’s hard for periodic paralysis sufferers to find people who understand what they’re going through. The vast majority of people have never heard of periodic paralysis. That means that people who actually have it are constantly met with stares, lots of questions, or sometimes even disbelief. Some people, when they see someone who is experiencing a paralysis episode, will believe that the person is just faking it and seeking attention. The continuous struggle of dealing with people who don’t understand is emotionally draining.
Another major problem in the periodic paralysis community is being misdiagnosed. When these patients visit the hospital, doctors tend to give them a diagnosis of a common disease instead of thinking that the problem might be a rare disease. (It’s that “horse” vs. “zebra” thing again!) Sometimes, these patients go many years without a periodic paralysis diagnosis. Throughout those years, they don’t receive the right kind of treatment. Then, after finally getting a diagnosis, they often have to explain to various doctors what periodic paralysis is. Hearing your doctor say that they had to look up your disorder on Google is not the most comforting experience.
Here is how you can help:
Rare Disease Day is the perfect time to join in solidarity with periodic paralysis sufferers. There is strength in numbers! Whether you have periodic paralysis, you think you might have it, or you don’t have it but want to help, you can take action for this important cause. Here are some things you can do:
- Follow along with us – The PPA has some cool things coming up for Rare Disease Day. Be sure to follow along so you won’t miss out! Check out our Instagram, Facebook, YouTube, and email newsletter to see what we’ve got going on. You’ll get lots of helpful info, patient stories, and more. (Always feel free to leave a comment and share your thoughts — we’d love to hear from you!)
- Spread the word on social media – Social media is a great way to raise awareness of Rare Disease Day. You can make a post telling your followers about Rare Disease Day with the hashtags #rarediseaseday and #showyourstripes. Sharing the PPA’s posts is another way you can raise awareness on social media. The more people who post and share, the bigger impact will be made!
- Take the pledge – Do you have periodic paralysis? Do you sometimes feel like you’re alone, with no one advocating for you? It’s very powerful when you advocate for yourself! Taking the pledge of advocacy means empowering yourself with knowledge and gaining strength and support from the periodic paralysis community. Click here to take the pledge.
- Tell your story – If you are living with periodic paralysis, you may be used to other people not understanding how you feel. Now, here is a chance to put your story out there and let your voice be heard! You can describe your experience and submit it with a picture or video to the Rare Disease Day website.
- Donate – Donating is powerful because it helps fund vital research! Dr. Stephen Cannon, a neurologist at UCLA, is one of the leading researchers on periodic paralysis. He has spent years doing painstaking work to learn more about this unusual disorder. Without hardworking scientists like Dr. Cannon, treatments and cures would never be found.
Donations are critical to helping this research happen. Even $5 or $10 can go a long way. Dr. Cannon needs to have mice in his lab to use in his research. If 36 people give $10 right now, the maintenance costs for one mouse will be covered for a whole year! You can also choose to make a monthly donation. Monthly donations provide ongoing funds, which are amazingly helpful for periodic paralysis research. Just $5 a month from 19 people is enough to sponsor one hour of research in Dr. Cannon’s lab each month. A gift of $30 per month for a year will sponsor a mouse for that entire year. Whether large or small, your donation is greatly appreciated!
It’s Almost Time…
Rare Disease Day is just around the corner. On this special day, let’s raise our voices to spread awareness of periodic paralysis. We are optimistic that there will be a cure discovered someday. In the meantime, the best thing all of us can do right now is LISTEN to those with periodic paralysis and advocate for their needs. We’re in this together! #RareDiseaseDay #PeriodicParalysis
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