top of page
blog
Search
Every cloud has a silver lining.-Kate’s Epilepsy Journey
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
Jun 20, 20183 min read
Jayden had Angels and his now an Angel- Migrating Partial Epilepsy
Jayden Thorn was born the 18th July 2010 at 12:56 a perfectly healthy boy with good apgar scores ( scoring done on new born’s to ensure...
Rare Diseases SA
Jun 20, 20182 min read
My EDS Journey by Yolanda Smith
It was a sunny Thursday morning the 21st of May 2009. I had my singing lesson planned for 8am. But my singing teacher realized within...
Rare Diseases SA
Jun 11, 20184 min read
My Goal is to help raise awareness, Treatment, Diagnosis and the quality of patient life.-Corne Roux
Dear Reader I am 31 years old and have had 38 operations to date due to my condition or the side effects of either the condition, or the...
Rare Diseases SA
Jun 11, 20182 min read
I’m alone yet so proud!- Myasthenia Gravis By: Stephan Bernhardt
Hi there. My name is Stephen Bernhardt. Born on December the 16th 1981(36). I was diagnosed with Myasthenia Gravis age 14. Surgery was...
Rare Diseases SA
Jun 11, 20183 min read
Listening to your own body is the best approach- Myasthenia Gravis by Hein Moller
Starting a new life with #MyastheniaGravis Since the middle of 2017 I had begun to notice on photographs that my right eye was droopy....
Rare Diseases SA
Jun 11, 20182 min read
Without my family I wouldn’t be able to smile- My life with Hidradenitis Suppurativa- Anthea T
I’m 41 yr old and been living with incurable, painful autoimmune skin condition called #Hidradenitissuppurativa. I was clinically...
Rare Diseases SA
Jun 7, 20182 min read
There is very little research done on HS. By: Tamara Wittstock
I was officially diagnosed with #HidradenitisSuppurativa also known as HS 4 years ago and recently my son Aiden started to develop the...
Rare Diseases SA
Jun 7, 20181 min read
If we stop who will try to fight for us My Journey with HS by:Zonika van der Merwe
This is a very embarrassing situation to be in, struggling with #Hidradenitis Suppurativa it’s a large impact on a everyday basis and...
Rare Diseases SA
Jun 7, 20182 min read
Bailey is truly a gem in our box of life’s jewels.- Bailey Kinsella with Chromosome Disorder
Our daughter Bailey was diagnosed with a Rare #ChromosomeDisorder, she has additional Chromosome material on Chromosome 15. She is...
Rare Diseases SA
Jun 7, 20182 min read
I AM VERY SPECIAL-Arabella
My name is Arabella, I was born on 12 January 2017 and this is (just the beginning) of my story.I have a genetic disorder called...
Rare Diseases SA
Jun 5, 20182 min read
A genetic disorder that is often misdiagnosed – Joylene Cornelius
#Prader-Willi Syndrome (PWS) is a genetic disorder that is often misdiagnosed. Meet Jody, he was diagnosed with #PWS just before his...
Rare Diseases SA
May 30, 20185 min read
I thought I was not going to make it – Carmen Crous
Ever felt like you have just taken on too big of a challenge? Well that was my initial thoughts when I galavanted on a trip to Peru with...
Rare Diseases SA
May 30, 20188 min read
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
bottom of page