Treatments

Rare Disease Day 2019

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Being a #RareWarrior means that today is one of the most important days of the year.  As you can tell by the title, it is International Rare Disease Awareness Day.  Being part of Rare Diseases SA means that I get to see behind-the-scenes & I am constantly in awe of just how much this organisation does.  When you mention that you have a particular rare disease, or are trying to raise awareness for one, people often look at you with total confusion & have no idea what you are talking about.  We need to work together to raise awareness & show that we are #AwareAboutRare & #Care4Rare.

According to the Rare Disease Day website, Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.  The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some poinRare Disease Dayt in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.

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I was diagnosed with Myasthenia Gravis when I was 15.  Before this I was a perfectly healthy child, & never even had flu, chicken pox or any of the other ‘normal’ childhood ailments.  I had never been in hospital besides the day I was born & didn’t truly understand what it was like to be sick or to have to fight every day.  I didn’t know anyone with a rare disease & I was stuck inside my happy little bubble.  I will be the first to admit that I was self-absorbed & didn’t understand people who were ‘sick’.

Why should I try create awareness for something that doesn’t affect me directly?  Because if we don’t all work together to create awareness, then we will forever be stuck in a rut & people with a rare condition will be continue to feel alone & unsupported.  It is so difficult trying to explain to people that you have a Rare Disease & they either just don’t care, or don’t seem to want to know more or show their support.

So please, rock your #Jeans4Genes, buy a sticker, & talk to others about what Rare Diseases are.  Like the RDSA Facebook page & share their posts.   When you read an article or post about a rare condition; read up more & share this on your page so you are teaching more people.  I can’t tell you how much we appreciate this.  It makes us feel like we aren’t alone, & like we are loved.

Thank you everyone for being there for me through this journey & for loving all the Rare Warriors around the world.  You are fabulous!

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Today is the day! Let’s seize this opportunity to create as much awareness for #rarediseases as possible.

There are many ways you can make it count:
1. Wear your jeans and RDD2019 ribbon
2. Attend an event in your area
3. Post your face paint selfie on social media and hashtag #RDD2019 #ShowYourRare
4. Share your story with others
5. Know the facts…and share them! http://bit.ly/WatchTheRealityOfRareDiseases

#BePartOfTheMovement #bethechange #Jeans4Genes

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2 thoughts on “Rare Disease Day 2019”

  1. With statistics like this, it’s not surprising that I know several people with some odd conditions. I think another way we can show support is at least try to be understanding if they’re having a bad day.

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