Rare Diseases South Africa NPO 120-991 is a cause very close to my heart.
In case you didn’t know, I have a rare disease called Myasthenia gravis and I also work for RDSA as my full-time job. However, I have other rare talents that you may not know about – my husband and I have mad dance skills (mad being the operative word); I am double-jointed and flat-footed; and I can give a mean massage. I can also dislocate my jaw and hip on command.
Myasthenia gravis is a chronic autoimmune, neuromuscular disease that causes weakness in the skeletal muscles that worsens after periods of activity and improves after periods of rest. These muscles are responsible for functions involving breathing and moving parts of the body, including the arms and legs.
#RarenessAwareness
After all the negativity associated with the past year, RDSA has decided to flip the switch on their awareness campaign and get everyday South Africans to #ShareYourRare whilst encouraging others to do the same.
Can you spin on your head, or do the worm, or even do chubby bunny with 20 marshmallows? Is singing opera your hidden talent, or can you bounce a coin into a glass every time? This is YOUR rare, and this deserves to be celebrated.
Being RARE, by definition, infers being unique, highly valuable and possessing admirable or exemplary qualities.
A rare blue diamond … Worth millions.
A rare species … Highly sought after.
A rare discovery … Highly newsworthy.
Except for Rare Diseases which are considered a financial burden, are overlooked by society and forgotten by the media.
The truth is that we are all RARE to some degree. We all have unique qualities, talents, features and abilities that make us different, and yet similar for that exact reason. This is something that deserves to be celebrated!
So how can you get involved?
This is super easy…
Share your rare on your social media platforms and tag Rare Diseases South Africa; challenge your friends or followers to do the same; and check out www.rareaware.africa for more details. You can also follow the Instagram page which has been set up especially for this campaign here.
Please also change your profile picture on your social media platforms to the “R” above, and include the caption “Join the tribe… Visit www.rareaware.africa #ShareYourRare“
With your support we can build a movement of Rare stories and get South Africa to share amazing positive stories building up to International Rare Disease Day on the 28th February 2021.
Wanna donate?
Founded in 2013 by Kelly du Plessis, Rare Diseases South Africa is a nonprofit organisation that has been successfully working to ensure that people living with a rare diseases and congenital disorders experience better recognition and support, improved health service and a better life overall.
Rare Diseases SA has 100% B-BBEE Social Development Recognition and is Section 18A certified with SARS making your donation tax deductible.
You can make a donation in many ways by visiting here.
Please help to create #RarenessAwareness and #ShareYourRare across social media. Let’s remind people about just how beautiful being rare is. Lets change our feeds to be filled with positivity and laughter through this difficult period. Let’s spread kindness and good by allowing our rareness to shine!
Some rare disease facts:
- In South Africa rare diseases are defined as a dsease affecting less than I in 2000 people in the population
- As a combined grouping, rare diseases affect 7% of the population, which is:
- 1 in every 15 people
- 4.1 million South Africans
- 70-80% of rare diseases are genetic. Some may be inherited in families while others only affect the individual
- Other rare diseases may be acquired during life due to trauma, environmental effects etc.
- For many rare diseases the cause is still unknown.
Can I count on you to get involved?
