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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


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


Our PawPanion
This is Peanut. He is a brown miniature poodle of only 2 years old. We got him when he was only 7 weeks old, dark brown and a little...

Rare Diseases SA
Apr 3, 20185 min read


My life is healthier for it
When I was 12 years old, it was school holidays and so we had a few late nights and then a few friends came and stayed over for a sleep...

Rare Diseases SA
Mar 26, 20183 min read


Cas is extremely destructive
Cassandra has a syndrome called #SmithLemliOpitz, and part of the syndrome is possible self-abuse. Cassandra has a very severe form of...

Rare Diseases SA
Mar 23, 20182 min read


Learning from Luke
Like every mother, I had dreams and aspirations for my unborn child. There was so much excitement about my first pregnancy. As I was...

Rare Diseases SA
Mar 22, 20184 min read
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