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Hlumela Tshijila
Jan 242 min read
Circular 1 of 2024: Iron Deficiency Anaemia as a PMB condition
The Council for Medical Schemes (CMS) seeks to provide clarity regarding the funding of Iron Deficiency Anaemia as a Prescribed Minimum...
91 views0 comments
Rare Diseases SA
Apr 12, 20233 min read
The Brave Fight
A story of hope and healing. “I'm Andi*, an ambassador for a very rare condition called Trimethylaminuria (TMAU or Fish Odour Syndrome)....
338 views0 comments
Rare Diseases SA
Oct 21, 20227 min read
Patient Profiles: Wrongful Diagnosis
Having been misdiagnosed, I would have never imagined how life with Pompe would turn out. My name is Michelle Marais and I am a Pompe...
262 views0 comments
Rare Diseases SA
Oct 21, 20224 min read
Dad Diaries: Life with A Rare Disease Is Anything but Normal
As a dad, it was my absolute honour and privilege to be able to give my daughter one of my kidneys on June 22, 2021. This was exactly...
214 views0 comments
Rare Diseases SA
Aug 16, 20223 min read
MPS Warrior, Juan
Rare Warrior, Juan Venter was born on the 21st of April 2022 at 35 weeks. Juan was immediately placed in Neonatal ICU for 4 weeks while...
199 views0 comments
Rare Diseases SA
Jul 8, 20224 min read
Tuesdays with Eden
After multiple doctors’ visits, an ultrasound finally confirmed what we already knew- something was wrong with our baby girl. Then came...
154 views4 comments
Rare Diseases SA
May 30, 20224 min read
Determined Tina, our MS Warrior
It is one of those days you never forget… Sunday 14th June 2005. I had flown back from JHB for work, and it was a chilly day. My husband...
127 views0 comments
Rare Diseases SA
Apr 4, 20224 min read
Raising Aidan Powered by The Hemp Cream
Authentic Parenting From Raising Aidan Microwave Cupcake Mix to The Hemp Cream, here’s an incredible story of a mother’s determination to...
104 views0 comments
Rare Diseases SA
Apr 4, 20224 min read
Bailey’s Surprisingly (Un)Normal Normal Journey
The new normal with Bailey and the fun we have as a family is no different to other families Our little Bailey came into the world on 7...
349 views0 comments
Rare Diseases SA
Apr 4, 20223 min read
Honouring Rare
Shining the light on the 1 in 15 people affected by rare diseases, including her own two rare warriors, Mrs. Isaacs tells her own...
279 views0 comments
Nomsa Mtshali
Feb 16, 20224 min read
My life with Idiopathic Intracranial Hypertension
At only 18 years, in my matric year, I saw my dream of becoming a teacher slowly fading away - a dream I have had from a young age....
401 views0 comments
Rare Diseases SA
Aug 14, 20193 min read
My Fireman’s journey with Fanconi Anemia from birth. By Gidion’s mom
My son Gidion was diagnosed with #FanconiAnemia (#FA) at birth, a very rare genetic disorder causing fatal bone marrow failure. He came...
78 views0 comments
Rare Diseases SA
Aug 14, 20193 min read
Daily life is a struggle but we couldn’t imagine not having Connor in our lives. #Dravet Syndrome
On the 21st of January 2011, our beautiful little boy Connor was born. He was perfect in every way and had no issues what so ever. Connor...
89 views0 comments
Rare Diseases SA
Jul 28, 20194 min read
What NOT to say to a grieving mother… Words by Tuschka Reynders
I thought long and hard before I posted this, since I don’t want to offend anyone. I know in my heart everything said to me is said with...
93 views0 comments
Rare Diseases SA
May 17, 20192 min read
Beautiful “Shanaya the First” gains her angel wings.
Little Shanaya Govender, or Shanaya the First as she affectionately called herself due to her love for Sophia the First and all things...
62 views0 comments
Rare Diseases SA
Feb 15, 20193 min read
A Mother’s Love and Dedication
Mc van der Merwe was born on 9 December 2014, after we had prayed for him for many years. He was such a beautiful baby boy, he did...
175 views0 comments
Rare Diseases SA
Feb 3, 20194 min read
What I hate about what we do…
There are aspects to working or running a charity that people do not realize. I would like to explain some of the things that we deal...
18 views0 comments
Rare Diseases SA
Dec 10, 20182 min read
Mnqobi – “The one who conquers”
Mnqobi – “The one who conquers” We were blessed with two boys, born on the 1st September 2018. Our son Mnqobi, baby Q for short, was born...
19 views0 comments
Rare Diseases SA
Nov 20, 20183 min read
Franklin Nomdoe’s Diagnosis with #NeuroendocrineTumour with spread to liver with Carcinoid syn
About 7 years ago, I noticed a peculiar reaction when I had something to eat or drink. Human nature has it, we try and self-diagnose...
139 views0 comments
Rare Diseases SA
Oct 18, 20189 min read
NEVER NEVER GIVE UP!!!!!!!!! Dante’s Journey with Schinzel-Giedion syndrome
Danté’s life journey started on 31 March 2015 and the doctors immediately noticed that something was not intact so he was admitted to...
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