My name is Aletta, I inherited VP from my dad, and my youngest son was also diagnosed in when he was 13.
I used to be very active on various support groups years ago,
and owe so much credit and gratitude to fellow patients and support groups within the PORPHYRIA community.
I designed THE BEAN JAR THEORY (explaining how triggers behave and how an acute attack develops), and wrote a few other articles on Porphyria too.
I was diagnosed twice in 20 years.
I was fortunate enough to grow up with the knowledge of VP in our family, but I only started looking at this disease with fresh eyes, after being almost bedridden for 2 years and with very limited help from the medical world. I know the daily struggles of the disease and how it affects ones life and that of family and friends.
Porphyria is grossly underestimated because it is a rare and deceiving disease. I hope to be able to contribute to giving patients the voice in getting the necessary support.
I know the nature of porphyria well, and after 3 years of getting myself back on my feet and functioning in a positive way, I have no reservations in sharing my experiences, nor standing up for patients, or taking on the outdated medical MO in how to perceive and treat porphyria.
I have made incredible friends via these support groups, and often my VP family was and is still my lifeline.
Today I follow a strict diet, I am fit, and able to live a fairly good life, It does not come without sacrifices though , having said that a day without symptoms is totally worth it!
The time was right to get our own foundation launched after seeing and hearing how many people within South Africa struggle daily having only support groups to turn to for help.
When I was approached to join this venture, I did not hesitate at all to jump on board.
I have Variegate Porphyria. I was born in Johannesburg, South Africa in 1965.
Having been officially diagnosed by a specialist in the field of VP in the mid 1980's, Dr S Kramer, there wasn't much support available at the time & by that I mean not only medical support following diagnosis but patient support groups. If there were any I was unaware of it. With the advent of computers, internet and social media people diagnosed today are more fortunate in finding support. By comparison there wasnt anything like that in the 1980's other than the good old fashioned Library to try to source information & lets be honest, there wasn't much at all.
I never came across anyone else with VP or any other Porphyria for that matter in the 35 years since I was diagnosed.
Feeling pretty much abandoned & isolated I found myself battling through on my own, second guessing myself all the time when I felt out of sorts & just not ever feeling completely healthy, I had nothing to measure my daily symptoms against I resigned myself to the fact that I didn't ever quite feel "normal" even though I avoided the "known" triggers.
In 2020, now living in the UK, I decided to search on FB for any Porphyria Groups, thats when I came upon the UK & USA Groups, from there I was put in touch with their websites. During one of my searches I stumbled across an article written by Aletta Longari, on her story with VP, soon realizing that Aletta was South African I got in touch with her. Through Aletta, I was introduced to a South African group, which I did not know existed.
Reading Aletta's story & that of so many other Porphyrics made me realise that everything I had been going through on my own was a common feature amongst my fellow Porphyrics.
The relief to know that what you have been feeling for years is the same as others is overwhelming...its a "light bulb" moment!
No one should have to suffer alone, without support.
Despite having VP & all the neurological issues that come with the disease I managed to obtain several qualifications through study.
I am a qualified Health & Safety Advisor & have Mental Health Awareness Certification.
I obtained a Diploma in Organic Skincare & Aromatherapy. I am a certified Life Coach & NLP Practioner & Certified Resilience & Positive Phycology - Creating Health Through Happiness.
I am a registered member of the Complimentary Medical Association.
Learning is a passion for me, a drive to prove that I can overcome in spite of this condition.
Karen van Zijl
Upon my return from yet another soul destroying visit at the hospital where you are made to feel like a fool for reaching out for help by the doctors and professors , I decided, enough is enough!
We needed to start a foundation to create public awareness and offer support to all other Porphyrics in South Africa!
There is no recognition by the medical profession that we struggle to function on a daily basis and there is no platform dedicated our particular South African strain, Variegate Porphyria.
I then called Aletta Longari, whom I had also found on the internet, and connected with her. Aletta has spent many years researching VP, the triggers associated with it and finding ways of managing the disease......she offers sound advice.
Aletta was my glimpse of light when I was in a in a very dark place.
I suggested that we start this organization and Aletta was ecstatic, saying that she has wanted to do this for years and now is the time to put this into action.
She then contacted Carol-Lynn who has taken the bull by the horns and created this website with the help of Aletta's documented research.
It is vital that South Africans are made aware of this debilitating disease so that people can get the correct testing and the guidance on how to live with VP.
We need each other and together we can get through one day at a time.
My professional life has been a real challenge, because I know that I am capable and good at whatever I put my mind to, however VP has taken control of my physical and mental wellbeing, making is impossible to be consistent in any form of full time employment.
I have excelled in the Jewellery field and as a fundraiser for an NPO, however as I mentioned, VP does not conform to daily structures in a work place.
I have therefore decided to do my best at helping fellow VP sufferers in which ever way I can.
Lets stand together!