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OMTOM run 2018 for Rare By Ryan Moss
I was privileged to run OMTOM 2018 as part of the Rare Diseases SA team, and the journey does not stop there. But let’s start at the...

Rare Diseases SA
Apr 16, 20182 min read


My Good And Bad days with Ankylosing Spodylitis #AS By Mariette Joubert-McKenzie
I remember suddenly not being ably to bend as far as I was used to. I had chronic back ache and saw the Chiropractor at least once a...

Rare Diseases SA
Apr 16, 20184 min read


My Sport Saved My Back By Ronelle Strydomon Ankylosing Spondylitis
I started with back pain years and years ago. High school,I think. At some stage it was in my hip, shooting down my leg etc. We did not...

Rare Diseases SA
Apr 13, 20183 min read


My Journey to discovering #Sjogrens By Bianca Dessington
It started with my eyes burning for a couple of days almost excruciatingly. I realized something was wrong when my eyes weren’t making...

Rare Diseases SA
Apr 13, 20182 min read


Listen to your Body #CushingDisease By Hettie Smith
I hope that I can bring some hope to other people out there. I am a 43 year old woman. I had a very rare illness, called #CUSHINGSDISEASE...

Rare Diseases SA
Apr 12, 20184 min read


#Cushing By Kristi Kirstein
My name is Kristi Kirstein and I’m a 21 year old student at NWU. At the age of 13 I started gaining weight uncontrollably. I was active...

Rare Diseases SA
Apr 12, 20181 min read


Beandri’s Progeria Journey by Beandri’s Mom
We had 3 beautiful boys, but like any parents, we wanted to have a little girl. Our little Angel, Beandri was born 20 November 2005. She...

Rare Diseases SA
Apr 11, 20182 min read


My Journey With Pompe by Jean Mari
I was born, a healthy baby girl, on the 18th of September 1985. By the time I got to High School, the symptoms started showing, but we...

Rare Diseases SA
Apr 10, 20186 min read


130 Days in ICU #PompeDisease
Where do i begin?? How do shorten my story. Well i will try my best. September 2016 was a month I would never forget. I started feeling...

Rare Diseases SA
Apr 6, 20185 min read


Absa Cape Epic 2018 By Bruce Campbell
Absa Cape Epic 2018, said to be the World’s Toughest 8 Day mountain bike stage race, they compare it to the Tour de France but for...

Rare Diseases SA
Apr 5, 20182 min read
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