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Never lose hope and always keep fighting. Life is beautiful! #Myasthenia Gravis-Retha de Wet
Hi! My name is Retha. I am a 24-year-old female diagnosed with Myasthenia Gravis. I’m also a speech, language and hearing therapy student...
Rare Diseases SA
Jun 28, 20182 min read
Never loose hope and keep fighting #Myasthenia Gravis- Dyanne Thomas
As part of #MyastheniaGravis Awareness Month I would like to share my story with you. It is long story, but I will do my best to...
Rare Diseases SA
Jun 28, 20183 min read
When I embarked upon this life journey, I was not prepared! #Myasthenia Gravis- Candice Mes
In 2006 I knew there was something wrong, but I didn’t know what it was. By the end of 2007, I was not coping and exhausted. My eyes were...
Rare Diseases SA
Jun 28, 20182 min read
I am thankful that Alf is stable Myasthenia Gravis – Alf Smulders
Living with Myasthenia Gravis in your Seventies As with Most People, Alf’s Road with MG spans many years before diagnosis and treatment....
Rare Diseases SA
Jun 28, 20184 min read
The Special Needs Journey is not one we planned to take..but we sure do love our tour guide-Emma
Our first child, a beautiful daughter, was born on 21 September 2003 –we named her Emma. She was perfect and life was good! On Christmas...
Rare Diseases SA
Jun 25, 20186 min read
The fighting spirit in Joshua is totaly remarkable #Hydrocephalus
Joshua was born premature at 33 weeks gestation 20 June 2016, his head circumference of 45cm was more then his length of 43cm to...
Rare Diseases SA
Jun 25, 20182 min read
A Path I Never Saw Coming – #Acromegaly
A new acromegaly infographic entitled, “A Day in My Shoes,” was released by Novartis this week. It was developed to help shed light on...
Rare Diseases SA
Jun 20, 20183 min read
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
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