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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
From pain to pleasure – a life renewed By Cobus Visser
This is my true story. It is about how I turned, in a single day,from #Depression, stress,anger, pills, addictions, to freedom,...
Rare Diseases SA
Apr 16, 20188 min read
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