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To be told that there is nothing you can do for your child is the most painful thing ever! #SMA

Rare Diseases SA

Aug 21, 20186 min read

To be told that there is nothing you can do for your child is the most painful thing ever! #SMA

Iman Casoojee January 2010, a new year full of hope promise and prosperity for South Africa. But a time bomb had been placed on my child....

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Having a child with a rare condition teaches you to appreciate life a whole lot more.#SMA

Rare Diseases SA

Aug 20, 20182 min read

Having a child with a rare condition teaches you to appreciate life a whole lot more.#SMA

By Arushi Nundkissoor Our greatest blessing. On the 25th of July 2016 we were blessed with our precious baby girl Arushi. She came into...

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Rare Diseases SA

Aug 16, 20183 min read

Janco VS Falconi Anaemia

By Janco’s Mom Imagine starting the day as usual with a healthy, happy child in the home. You are going for a visit to the paediatrician...

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My message to my #RareWarriors is, please do not give up hope- Khadeeja on Gastroparesis

Rare Diseases SA

Aug 15, 20183 min read

My message to my #RareWarriors is, please do not give up hope- Khadeeja on Gastroparesis

My name is Khadeeja.. I am 21 years of age. The journey of life with a rare disease began for me in March 2016 when I was 19 years old....

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We are devastated to live without our Riley, but we are so proud of his legacy! #OurRareWarrior

Rare Diseases SA

Aug 13, 20187 min read

We are devastated to live without our Riley, but we are so proud of his legacy! #OurRareWarrior

Riley was born on the 1st of November 2012. He was so precious. Riley sailed through his first weeks as a new born, he had a little...

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We celebrate every milestone and achievement-Daniels Journey with Psoriasis

Rare Diseases SA

Aug 6, 20185 min read

We celebrate every milestone and achievement-Daniels Journey with Psoriasis

Daniel was induced at 37 weeks and born with #NeonatalPneumonia and at 6 weeks started developing a rash on his neck which after numerous...

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Life with a child with specials needs comes with a different set of challenges and rewards.-Emily

Rare Diseases SA

Aug 2, 20182 min read

Life with a child with specials needs comes with a different set of challenges and rewards.-Emily

When Emily Bean was born in 2011, her parents were prepared (as much as they could be) for the fact that she had a #cleftlip and...

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Rare Diseases SA

Jul 16, 20184 min read

Shanaya The First – Supergirl

Meet our beautiful supergirl Shanaya the First who is currently battling Stage 4 #EwingSarcoma in her left humerus with #metastasis in...

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A tough battle with MG, But Megan has the most amazing smile ever! Myasthenia Gravis- Megan Hunter

Rare Diseases SA

Jul 3, 20187 min read

A tough battle with MG, But Megan has the most amazing smile ever! Myasthenia Gravis- Megan Hunter

My journey with #MyastheniaGravis Growing up I was a healthy, happy child. I never had any of the usual childhood ailments mumps, chicken...

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Despite not knowing what the future brings I choose to remain Positive Myasthenia Gravis-IIze Fourie

Rare Diseases SA

Jul 3, 20182 min read

Despite not knowing what the future brings I choose to remain Positive Myasthenia Gravis-IIze Fourie

I was diagnosed with #Fibroelastosis of the heart when I was three days old. My parents lost their first child to the same disease a few...

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Never lose hope and always keep fighting. Life is beautiful! #Myasthenia Gravis-Retha de Wet

Rare Diseases SA

Jun 28, 20182 min read

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...

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Never loose hope and keep fighting #Myasthenia Gravis- Dyanne Thomas

Rare Diseases SA

Jun 28, 20183 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...

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When I embarked upon this life journey, I was not prepared! #Myasthenia Gravis- Candice Mes

Rare Diseases SA

Jun 28, 20182 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...

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I am thankful that Alf is stable Myasthenia Gravis – Alf Smulders

Rare Diseases SA

Jun 28, 20184 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....

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The Special Needs Journey is not one we planned to take..but we sure do love our tour guide-Emma

Rare Diseases SA

Jun 25, 20186 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...

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The fighting spirit in Joshua is totaly remarkable #Hydrocephalus

Rare Diseases SA

Jun 25, 20182 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...

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Rare Diseases SA

Jun 20, 20183 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...

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Every cloud has a silver lining.-Kate’s Epilepsy Journey

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...

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Jayden had Angels and his now an Angel- Migrating Partial Epilepsy

Rare Diseases SA

Jun 20, 20182 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...

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Rare Diseases SA

Jun 11, 20184 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...

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