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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
I am so proud of my son. Chrisjan
My name is Helene and my son is Chrisjan. He is 13 and has been diagnosed with Ehlers-Danlos Syndrome hyper mobility. I have two children...
Rare Diseases SA
May 16, 20182 min read
What you see is what you get – an MPS story told by Mukateko Mahonisi
What you see, is what you get with Amu Junior. Amukelani Junior Maluleke is the only son of his dad and mom and he is a lovely, smiley...
Rare Diseases SA
May 15, 20182 min read
I blamed myself – Yandisa Xulu
On 04/01/2012 I gave birth to strong, healthy, wonderful baby boy Yandise Xulu. Even though I knew it going to hard rising a kid by...
Rare Diseases SA
May 15, 20181 min read
How my story unravelled – Simon Bond
My name is Simon Bond. I’m now 23 years old. My story only started to unravel as a teenager. In 2008, when I was 15 years old, I had a...
Rare Diseases SA
May 15, 20184 min read
A shock to our family – Granny Carol
At the age of on a visit to my son’s place I realized the size of Geodrick’s head to be abnormal and advised parents to take him to...
Rare Diseases SA
May 15, 20182 min read
He is triumphing over all the odds – Diane May
Matthew May is a happy, carefree little boy of 4 years, who is completely unaware that he is a success story triumphing over all the...
Rare Diseases SA
May 15, 20183 min read
There are new challenges along the way – Clarenche Jacobs
My daughter Chade was diagnosed with #TuberousSclerosis Complex 2015, she was three at the time. It all started with one of her eyes...
Rare Diseases SA
May 15, 20182 min read
A journey never planned or asked for My Life with Lupus By Shivani Pillay
The great Albert Einstein said, “In the middle of difficulty lies opportunity” No truer words could be spoken in my quest in fighting...
Rare Diseases SA
May 10, 20183 min read
Abby is a very bright light in our lives #Osteogenisis Imperfecta By Abby’s Mom
Abby was diagnosed with OI type III (commonly known as brittle bones) at birth. She had 27 fractures and completely deformed legs. From...
Rare Diseases SA
May 8, 20181 min read
LIVE EVERYDAY AS IF IT’S GOING TO BE YOUR LAST #DPO with Pulmonary Hypertension By Gregory Gat
I was extremely active ran marathons – weight training 2 hour cardio session in the morning, 10km afternoon run in the week and far run...
Rare Diseases SA
May 7, 20182 min read
Milandre is a total blessing! Her journey with PKU by Marian
Being able to fall pregnant naturally was such a big blessing for me, as our family has a history of #endometrioses. I had a very...
Rare Diseases SA
May 4, 20188 min read
I have organ donors who allowed me to be alive today #Cystic Fibrosis By Alice Vogt
I was born with a genetic disease called #CysticFibrosis. CF is an inherited disorder that causes severe damage to the lungs, digestive...
Rare Diseases SA
May 3, 20182 min read
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