South African Porphyria Foundation - 266-465 NPO
Our foundation exists to support and educate patients, family and friends. Also to fund much needed research.
Create awareness through public and medical fields in order to help those who are undiagnosed and suffering to be diagnosed promptly.
09/06/2022
The UK Porphyria Medicines Information Service (UKPMIS) has just announced that the 2022 SAFE drugs list has been updated and can be found on their website.
The following medicines have been added as SAFE:
• Casirivimab
• Imdevimab
• Sotrovimab
• Nuclear medicine - technetium
No drugs have been removed from the list due to concerns about safe use in porphyria.
https://www.wmic.wales.nhs.uk/specialist-services/drugs-in-porphyria/?fbclid=IwAR0CFtaKuMXw76juZabVt366hUqiD_-eOsA92AjmkbRjr_JWQN0jyy9fxmo&fs=e&s=cl
Drugs in Porphyria - Welsh Medicines Information Centre The Welsh Medicines Information Centre (WMIC) offers a specialist advisory service on the safe use of drugs in porphyria. The UK Porphyria Medicines Information Service (UKPMIS) is provided in conjunction with the Cardiff Porphyria...
02/06/2022
Important information for EPP patients:-
United Porphyrias Association is proud to share an invitation for EPP patients, families, and caregivers! In coordination with Global Porphyria Advocacy Coalition (GPAC), the umbrella organization for porphyria patient advocacy groups across the globe, we are delighted to invite you to a virtual meeting.
EPP Connect is a first ever event to bring EPP patients together from across the globe.
The gathering will be on Zoom and will last 1 ½ hours. There will be breakout rooms in different languages and for different age groups too – all are welcome!
Register Here: https://bit.ly/3m5KwLt
We are looking to grow our network of medical professionals, if you work in the following areas of expertise and would be keen to get involved with the foundation please reach out to us for further discussions.
👉Pharmacists
👉General Practioners
👉Haematologists
👉Opthamoligists
👉Hepatologists
We are a fledgling nonprofit, we do not receive support from any means other than that of provided by our founders.
Please reach out by contacting; Aletta Longari; Carol-Lynn Croker; Karen van Zijl by inboxing us or email us for further information if you are interested to hear more about this!
Aletta Longari Karen Van Zijl Carollynn Croker
24/05/2022
📷TWO OF ME Living with Porphyria video chronicles the lives of seven people around the world living with acute hepatic porphyria (AHP). Directed by Emmy-nominated filmmaker Cynthia Lowen and developed in collaboration with the AHP community, the film is a story of human strength, perseverance and survival. Many common themes emerged in their stories, including the challenges in receiving a diagnosis, the immense physical, mental and emotional toll of the disease, as well as its impact on relationships, careers and aspirations. Through compelling personal interviews, Two of Me: Living with Porphyria explores these key themes and aims to inspire viewers to “Tell 15” others about the film to generate greater awareness of AHP and help shorten the 15 years it can take to reach an accurate diagnosis. Two of Me: Living with Porphyria is available on PinpointAHP.com
Pinpoint AHP® | Acute Hepatic Porphyria Explore this resource to help recognize acute hepatic porphyria (AHP) and start a conversation with your doctor. Hear from people with acute hepatic porphyria (AHP) about their experiences.
Global Porphyria Awareness Week has come and gone. A massive thank you to all our local members who got involved and contributed towards raising awareness. There is still a long road to travel but we will get there!
12/04/2022
Did you know that there are more than 6,000 identified rare diseases?
The spectrum of rare diseases is diverse, and symptoms vary from disease to disease.
But the rare disease community is united by a common goal: to fight 💪 for equity for everyone living with a rare disease all around the world 🌎.
👉 Find out more about rare diseases: https://cutt.ly/7D7IcJY
12/04/2022
Interesting reading on how the Central Nervous System is affected in the Acute Hepatic Porphyrias.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8700611/
Mechanisms of Neuronal Damage in Acute Hepatic Porphyrias Porphyrias are a group of congenital and acquired diseases caused by an enzymatic impairment in the biosynthesis of heme. Depending on the specific enzyme involved, different types of porphyrias (i.e., chronic vs. acute, cutaneous vs. neurovisceral, hepatic ...
12/04/2022
The BPA is having a Patient Day, this will also be livestreamed via zoom so if any of our members are interested in this, please register via the link https://bpa-reconnect-2022.eventbrite.co.uk
With just over a month to go until our 2022 Patient Day in Dundee, we can confirm that two of the amazing speakers we have lined up are: Dr Robert Sarkany (London) and Dr Danja Schulenburg-Brand (Cardiff). Get registered today for the chance to ask them questions and meet other porphyria patients. https://bpa-reconnect-2022.eventbrite.co.uk
07/04/2022
As its Porphyria Awareness Week, some of our members are taking big steps in the name of creating awareness.
I have taken the plunge and joined many around the globe, which is a huge step for me to be this open and literally bare my soul for all to see on the foundations YouTube channel.👇
YouTube Video link for Porphyria Awareness Week 2022 https://youtu.be/mW9vBykc5lM
Porphyria Awareness Week 2022 In light of it being PAW 2022, Carol-Lynn Croker one of the members & co-founder of the South African Porphyria Foundation (SAPF) has recorded a video of ho...
05/04/2022
Our LIFESAVER when everything else fails.
Check out our Blog on Porphyria Awareness Week!
This is why it’s important to raise awareness about Porphyria!
Approx 8 years ago whilst still living in Johannesburg, South Africa , I went into a private hospital for a medical procedure. During my pre-operative, the nurse on duty was going through my medical history and asked if I had any allergies. I replied saying I had Variegate Porphyria and caution was to be taken when administering any medication both pre-operative and post-operative. I pointed to my medic alert bracelet to indicate this. The nurse then looked thoughtful for a moment before responding “oh I have heard of Porphyria before… ok but it’s not like life threatening hey!”
She was promptly set straight on that score!
It’s not just doctors that are often not aware of Porphyria, this extends to other healthcare professionals too, including and most importantly those nurses who are tasked with taking care of us post-operatively too.
When you are wheeled out of the operating theatre, on a cocktail of pain meds and anaesthesia still coursing through your veins you are in the most vulnerable state ever, you rely solely on those caregivers, putting you at the mercy of these people, who if they don’t know what they are doing can be the choice between life and death.
By Carol-Lynn Croker
What are you doing for Global Porphyria Awareness Week? Submit or send us info on how you will be raising awareness within your community!
Lets colour the globe purple!!!!
03/04/2022
In support of Porphyria Awareness Week, our very dear friend Joanna Starr Gibson who has been through so much trauma over the years, putting on a brave face to the world, yet behind closed doors she suffers. Joanna has a genetic disease, Variegate Porphyria, the South African R59W mutation. This disease does not only impact her but that of her friends and family too. Loved ones want to help but often don't know how. This is a lonely disease because on the face of it one looks healthy enough yet nothing could be further from the truth.
Without further ado, here is Joanna's beautiful poem detailing her love / hate relationship with Porphyria.
https://www.porphyriasafoundation.org/post/this-broken-body-of-mine
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 them out" PORPHYRIA Where is the joy, my heart is broken Where is the life, the life has been taken I’m in a movie but silently watching, time elapsing, drownin...
Tomorrow is the start of Global Porphyria Awareness Week!! What are you going to do to create awareness?
Here are some suggestions we thought you might like:-
▶️Take a photo of yourself / family wearing purple for Porphyria and post online!
▶️Submit a story about your journey with Porphyria.
▶️Post a video of your Porphyria Journey.
▶️Change your profile and cover photo to represent Porphyria Awareness Week!
▶️If you belong to a church or social group use this opportunity to talk about yourself and your Porphyria.
▶️Wear a purple ribbon for Porphyria.
▶️Write a letter to your local newspaper about yourself and Porphyria.
These are just a few ideas.......so, what do you plan to do to use this week to create awareness?
We look forward to hearing some of your ideas!
30/03/2022
Let's kick off with Porphyria Expert Dr. Bruce Wang. Link UP with us for a Q and A!
Register now by clicking here: https://bit.ly/3qGTOA8
Global Porphyria Awareness week takes place from the 2nd to 9th April 2022! Lets share and raise awareness!
GLOBAL EVENT -On Friday, April 8 – Let’s join together
to color the globe. Wear purple for Porphyria
25/03/2022
Hi all Friends and Porphyria Family.
It is our time of the year to join the International Mission to Raise Porphyria Awareness.
Please be so kind as to share and like this post.
The more people recognize this disease and the havoc it causes in a Porphyrics life.. The sooner the medical world will take action.🥰
20/03/2022
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 them out" PORPHYRIA Where is the joy, my heart is broken Where is the life, the life has been taken I’m in a movie but silently watching, time elapsing, drownin...
18/03/2022
PORPHYRIA - Where is the joy, my heart is broken
Where is the life, the life has been taken
I’m in a movie but silently watching, time elapsing, drowning, screaming wanting to breathe to feel the sun on my face
Grief grips at me deep in my soul, at the whipping post no flogging will resolve
I seem lost, caught in the matrix, can’t find my way out to the light that will save me
I pray for ease but there is no reprieve
So hard I’ve tried so many mistakes I’ve made, a body fighting so hard to regain,
That gift of life, of energy and drive, seems to elude me no matter how hard I’ve tried
I’ve tried...
I’ve tried and I’ve crossed the bridge to the other side
I swim through the matrix opening doors looking for that light that I adore
No solid answer is it my fate to crawl towards heavens gate,
In denial, I stand because how can this be
I used to be so young, healthy and free
Porphyria kidnapped me in the night, without my consent it stole my life
Bound me and gagged me and left me to die, i drew up rage to fight against the lies
I bludgeoned my way along the porphyria path, wiping away the tears with bloodied wrists in the dark
It’s been years of purging like a snake losing its skin, a Phoenix rising from the cinders it has been burnt in
I still stand you see after all this time, I never gave up because how could I? Through the ashes I’ve come many years down the road only now I stand in a cloak of gold, with courage in my heart and a new found strength I will walk with Porphyria but it will never be my friend.
Dedicated to: My 4 +1, My Oak Tree, Dr J
Dr S and all my amazing support groups
Written by
Joanna Starr Gibson
02/03/2022
Dearest Lynn
Wishing you a year filled with Health and Love. Thank you for EVERYTHING you do for this foundation!
With So Much Love,
Your Porphyria Family 💝❣️🎊🎁
13/02/2022
Searching for our Purple People!
www.porphyriasafoundation.org
09/02/2022
🖐Stop‼️
⚠️Attention‼️‼️
➡️This is the patient journey.
➡️The average person with a rare disease will go through this.
04/02/2022
We invite you to read about the personal story of Amanda Boston, this remarkable young woman has both tenacity and courage. Never give up!!!!
Aletta Longari Karen Hunter-van Zijl
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 journey to diagnosis with Variegate Porphyria. Editor I will never say my story is a sob story. I will always say its my time to fight and nothing is ever going t...
Sneak preview, our blog for Feb features "My Personal Story" by Amanda Boston.
Amanda has Variegate Porphyria. Her story is one of hope, courage, perseverance and determination.
Keep checking back with us, the blog will be live soon!!!!!
Just had one of the best aromatherapy treatments for fluid retention and aching joints Total Concept Salon & Spa. Feel like a new person thanks to Melissa!
Alternative treatments can often be beneficial for Porphyria patients. Just remember to tell your therapist about your condition and make sure the treatments are not contra indicated.
Cutaneous Porphyria’s and the sun!
The summer months in South Africa are challenging, heat and humidity can severely aggravate Porphyria. Keep cool and hydrated, protect your skin from the elements, wear a wide brimmed hat, protective clothing, sun screen. Plan outdoor activities in the early morning or evening avoiding the sun!
Talking about Porphyria leads to awareness. I use every opportunity to educate others and talk about my Porphyria , how it affects me and and how I manage it. What do you do to raise awareness?
Did you know "The liver coordinates over 500 essential functions for the body. It controls the filtering and purifying of the blood flowing through it, whilst producing hormones and simultaneously stores extra nutrients like fat-soluble vitamins. It also removes excess proteins, damaged red blood cells and toxins.
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