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Porphyria SA
- Apr 5
- 2 min
Porphyria Awareness Week 2022
Porphyria Awareness Week is a global initiative aimed at educating and raising awareness about the Porphyrias. The South African...
70
Porphyria SA
- Mar 20
- 2 min
This Broken Body of Mine
"The day I wrote this poem, I was filled with both anger and sadness, such was the emotions I felt that I had to put pen to paper and get...
2401
Porphyria SA
- Feb 4
- 4 min
My Personal Story
By Amanda Boston Unedited, this personal story depicts the trials faced by this remarkable young woman, inviting the reader to follow her...
571
Porphyria SA
- Nov 5, 2021
- 3 min
Spotlight on Erythropoietic Protoporphyria or (EPP as its also known)
According to data on the UCT website, there are roughly 20 families in South Africa with EPP. EPP is caused by mutations in one or more...
150
lynncroker6
- Nov 2, 2021
- 6 min
The Mental Strain of Living With Variegate Porphyria!
When I sit and think about what it means to have Variegate Porphyria a few things come to mind, the painful skin lesions and scaring, the...
650
Porphyria SA
- Sep 19, 2021
- 8 min
South Africans who have a rare disease - Are they slipping through the cracks in the system?
What happens to people in South Africa who have rare diseases? Little is known about the number of people in South Africa who are living...
300
Porphyria SA
- Aug 9, 2021
- 28 min
My Journey with Variegate Porphyria
At the age of 23, I was officially diagnosed as having the hereditary disease Variegate Porphyria, otherwise known as VP, Porphyria...
350
Porphyria SA
- Aug 3, 2021
- 2 min
How are you feeling?
With all the goings on in the world, is it any wonder we are suffering from higher anxiety levels than ever before. For a patient...