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A genetic disorder that is often misdiagnosed – Joylene Cornelius
#Prader-Willi Syndrome (PWS) is a genetic disorder that is often misdiagnosed. Meet Jody, he was diagnosed with #PWS just before his...
Rare Diseases SA
May 30, 20185 min read
I thought I was not going to make it – Carmen Crous
Ever felt like you have just taken on too big of a challenge? Well that was my initial thoughts when I galavanted on a trip to Peru with...
Rare Diseases SA
May 30, 20188 min read
She is Flourishing – #RareMum Tina Joubert’s story with CVID
Our beautiful little girl was born 20 Sep 2013, for the first 4 days while in hospital all went well and then nothing was ever the same...
Rare Diseases SA
May 30, 20183 min read
We appreciate every new moment of our lives – Cathy Clayton
Hi there, I’m Cathy and I have #CysticFibrosis (CF). I was only diagnosed at the age of 12 years old. This diagnosis occurred only after...
Rare Diseases SA
May 30, 20183 min read
Coming to Terms with being a mom of a Special Needs Child – Prader-Willi Syndrome Awareness Mo
Thanks to Elri’s mom, Brenda Butler, for sharing this story: I’m sure we’ve all heard the story “Welcome to Holland” Well, I’m one of...
Rare Diseases SA
May 24, 20183 min read
Eary diagnosis would have a made a huge difference -Aiden Forbes #Prader-Willi Syndrome
Prader-Willi Syndrome (PWS) is a genetic disorder that is often misdiagnosed.Despite the fact that the incidence of PWS is 1 in 15,000...
Rare Diseases SA
May 24, 20183 min read
Working with a Rare Disease
You never imagine that your life could change in an instant. You never imagine that your ‘normality’ can get turned upside down & spun...
Rare Diseases SA
May 22, 20184 min read
My marriage is stronger because of Jack’s condition#CPS By:Alison
On the 15th June 2014 my beautiful son Jack Christian Tilling was born. He was healthy at birth, but 3 days later showed signs of being...
Rare Diseases SA
May 21, 20186 min read
I know I am a warrior By Suze
Ehlers Danlos Syndrome, Pregnancy, Life and Everything Else I am sharing my story, in the hope that it may create awareness in the...
Rare Diseases SA
May 17, 20188 min read
Being a mom to My Zebra Princess Angie’s Ehlers danlos hypermobility
In 2013 we found out that Angies eyesight was so bad that she could hardly see anything, she had to get glasses with very strong lenses....
Rare Diseases SA
May 16, 20182 min read
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