What is Rare Diseases Day?
Rare Disease Day is a globally coordinated movement for people living with rare diseases to achieve equity in social opportunity, healthcare, and access to diagnosis and therapies. Since its creation in 2008, Rare Disease Day has played a critical role in building an international rare disease community that is multi-disease, global, and diverse – but united in purpose.
The day is observed every year on February 28 (or February 29 in leap years)—the rarest day of the year.
Rare Disease Day was set up and is coordinated by EURORDIS and 65+ national alliance patient organization partners. Rare Disease Day provides energy and a focal point that enable rare disease advocacy work to progress on the local, national, and international levels.
Rare Diseases Day 2023
Colours can speak louder than words and this Rare Diseases Day we are asking South Africans to #shareyourcolours and brighten the world to create #rarenessawareness for the #1in15 South Africans affected by a rare disease. Rare Diseases South Africa needs your help to fill the world with colour and shine your light for rare. Join the campaign to #shareyourcolours and bring real rare voices into the mainstream. We are a voice for rare human beings, and we want you to join us in supporting them.
What makes me rare?
I was born on 22/10/1997. I was born in a set of fraternal twins. Around the age of one, my parents realized that I wasn’t developing like my sister was. We went to the doctor, where I was originally diagnosed with low muscle tone. We tried months of physical therapy with no improvement. I was sent for a muscle biopsy in my neck where they discovered that I had SMA (Spinal Muscular Atrophy).
Spinal Muscular Atrophy is a rare degenerative disease that affects the spinal cord and nerves. This results in muscle wasting and weakness. I was given a life expectancy of 5 years old. My parents were told to take me home and enjoy the time we had. That plan didn’t work for us and we were not just going to give up! As a family, we take every day as it comes and always hope for the best.
I love to use my rare to create awareness. I want to be a part of the change that I want to see in the world. Rare is beautiful, powerful and amazing. Every rare warrior deserves the opportunity to be successful in the world. I personally believe that it starts with education!
My connection to Rare
Having a rare disease has always made rare diseases day quite important to me. It is a crucial element in creating awareness. To create change towards accessibility, to help get access to important medications and just have people understand what these diseases are and what our lives entail with having them. I joined Rare Diseases South Africa originally as a patient, then as an advocate for Spinal Muscular Atrophy and I am now part of their team as the disability advocates for projects that entail a perspective on accessibility.
I wrote down what words come to mind when I think of the word colours and its connection to rare.
C – Capable
Even though someone may have a rare disease or disability they are still perfectly capable of living life to its full. They are still capable of doing what people consider to be everyday activities. They are capable of understanding what they are worth and what they deserve.
O – Optimistic
One of the biggest elements of having a rare disease is often having a very limited lifespan. You are often not given very long to live because there isn’t a cure for your disease and there isn’t a medication that can be very helpful. With this kind of expected outcome, you need to be optimistic. You need to have a positive attitude to succeed. Optimism is the reason that I am still alive, and it is the reason that I believe in having hope and that the possibility of my life is forever continuing.
L – Lovable
Everybody deserves to be loved and in my opinion, someone who is rare deserves it so much more! It is important to understand that it is not a burden, it is an opportunity for a family to find a deeper love that they may have never understood.
O – Open Hearted
When somebody suffers from a rare disease, they are often open-hearted because they understand how many struggles one could be through behind closed doors. Every day is an opportunity and we should all have an open mind, heart, and soul for everybody that is around us.
U – Undeniably Strong
As a rare patient you are is undeniably strong! Our life is complicated, it’s gruelling and we must have strength like no other to succeed.
R – Resilient
I personally believe that resilience is learned. Living through obstacles and being told that you would live until the age of five makes you resilient. You also hear a lot of things that could be quite damaging to you as a person. This is due to people just not understanding disabilities and rare diseases. I grew a tough skin and an ability to teach people through their misunderstanding rather than just getting upset.
S – Shine Your Light
You are bold, you are bright, you are rare. Everybody is beautiful and everybody deserves to shine, and it is so important to share your light and your beauty. Everybody has something that makes them rare. Everybody can be a part of creating change. Join the campaign and share your light and your colours and let’s create awareness about rare diseases!
