We’ve all been affected by a disease in some way or another, directly or indirectly. And when asked to be a part of this campaign, I just could not say no! How often do you want to make a difference in the world but just never know how to or if your small contribution would even make a difference? For me..so many times.
This just seemed so natural for me, one of my favourites modules at university was diseases and treatments thereof. They were so interesting and easy to learn (always a bonus when university is kicking your ass). So my desire for helping others has always been there. I’ve had so many family members and friends affected by common diseases like cancer but imagine waking up and someone you love has a rare disease, a child, a niece, a nephew and there is no cure or treatment? I could not, so I loved hearing that children suffering from rare diseases would not allow anyone to get them down or pity them.
The Rare diseases SouthAfrica not only do research and try to find cures but they make these little children’s last years as comfortable and fun as possible! Here’s a sobering statistic that I‘ve only become aware of since I partnered up for this campaign – Because there are over 6 000 different rare conditions, one in ten South Africans has a Rare Disease. If you consider the impact not only on each of these 3.7 million people, but also on their loved ones, it quickly becomes clear that this is an issue that affects everyone?
As an umbrella organisation, Rare Diseases serves ALL people with rare diseases and is a registered NPO and PBO with impeccable governance and a robust program of activities. That They choose optimism over apathy and this has been the key to success and has resulted not only in accessing treatment for patients but also a vibrant and active community of support that continues to grow!
This years campaign is so cheeky (no pun intended) and appropriately named #KissMyRare because these patients always say that ‘rare diseases can kiss our butts’. That I decided to be a little cheeky myself and shoot something that showed me in the Rarest form.
I encourage you all to be a part of this and buy your ribbon in support of these amazing human beings:
Buy a ribbon
You can find them on Facebook at:
Rare Diseases South Africa
Makeup: Ellenor Ndlovu @makeupbyellenor
Photography: Kyle Carson