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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
Celebrate every little moment – Cheri Roberts
In honour of #prematurity awareness month I am honoured to share my story of my two little miracles – Ethan and Emily. My husband Brad...
Rare Diseases SA
Apr 25, 20186 min read
My Running Keeps me stronger #CVID By Lois Spies
My journey to diagnosis As a child I was healthy and loved doing sports and being outdoors. After my first pregnancy, I seemed to get...
Rare Diseases SA
Apr 24, 20184 min read
Not Even FOP Could stop me. By Ciske Faber
I was born with malformed big toes. In 2011 I got admitted for a swollen neck muscle. I got diagnosed with type 1 diabetes and after...
Rare Diseases SA
Apr 23, 20181 min read
The only way from here is up! By Catherine Griffiths
Gosh, where does one begin when a story has been nearly 32 years in the making… My name is Catherine and I am many things. First and...
Rare Diseases SA
Apr 23, 20185 min read
Jason Struggles like a true Super Hero By Jason’s Mom
Jason was born 9 weeks premature. He had severe silent #Reflux and a #HiatusHernia at birth. Jason was always a difficult feeder. His...
Rare Diseases SA
Apr 23, 20183 min read
Ezra’s Haemophilia Journey
By Ezra’s Mom My son Ezra was diagnosed with a rare disease just a few days after birth, when he was circumcised and the wound bled for...
Rare Diseases SA
Apr 17, 20184 min read
I am a carrier and so are my 4 Children #Haemophilia by Hayley Kassen
I am Hayley Kassen and I am a carrier. I gave this gene or is it chromosome to all of my kids, Monique 29 years old, Tasmin 24 years old...
Rare Diseases SA
Apr 17, 20184 min read
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