Newsletter 2022 January # 1
News from the Chairperson

A warm welcome to 2022!

It was a bit of a bumpy ride for me, as I recovered from COVID. A special thank you for all the support and well wishes.

We had a brilliant 2021 year. We managed to make valuable connections, secure funding with partners and complete projects that were vitally important. We also managed to put together a robust team of volunteers for 2022.

Our focus will remain supporting AxSpA patients, advocating for our disease in our country and educating all role players involved in AxSpA.

A special thank you to ASIF, this global network, that has more than 45 members, which South Africa is very proud to be part of, forms a integral part of who we are and where we want to go. ASIF provides endless support, resources and sets the perfect example of how to support members with AxSpA. 

A special thank to SA Physio, who have dedicated a large part of their Newsletter talking about AxSpA, they continue to support our cause.

We have had a 100% growth in our membership in a year, this is an exceptional incline. We now have 250 registered patients and over 758 members on our Facebook Group.  It has been proven that patients that belong to a support network have more knowledge and tools to handle their disease. We continue to work hard to talk to rheumatologists and various other key healthcare providers to create awareness of our Patient Support Group.

As our Association does not require any membership fees from our patients, we lean heavily on funding from pharmaceutical companies and corporates. We have been lucly enough to receive funding to attend the SARAA conference in May in Durban. We hope that we will receive funding for our GP awareness campaign in Cape Town later this year. We also plan a couple of webinars through the year. We hope to secure funding to administrate our website and paid advertising.

PMB Application Update:
We plan to receive the Treatment Guidelines for AxSPA by the end of March, and we hope to complete and submit the PMB application by June. A special thank to all our associates and SARAA for their valuable support in this matter.

Special Events:
Our Talk to be Heard Event, will no doubt raise some emotions. Talking about your AxSpA is so critical for your healing. More about that later in the newsletter.

We have secured a relationship with The  South African Optometric Association, and we hope to provide our members with valuable resources soon. We continue our relationship building with rheumatologists in our country. We have managed to distribute more than 6000 pamphlets to various doctor rooms at the end of last year to create mroe awareness, and to hand to newly diagnosed patients.

We look forward to a bumper year, for your ease, we have done a 6 month planning program, so you can diarise all these events.

Meet the Crew Zoom 27 Jan @ 19h00 Zoom Link

Axial spondyloarthritis (axSpA) is a life-long inflammatory arthritis where the primary symptom is back pain and most commonly affects people starting in their mid-20s

As many as 25 to 54 million people have axSpA globally and wait an average of 7 years for an accurate diagnosis.

Due to the way axSpA affects a person’s body, it can have a devastating impact on many aspects of everyday life, particularly when it comes to work, family, and relationships, with:
- More than 60% at risk of poor mental health
- 2/3 facing work-related issues like taking sick leave or reducing working hours
-1 in 3 experiencing worsening relationships with their significant other

Living with axSpA can be isolating and difficult, both due to the way it affects an individual's life and the complexities getting to a diagnosis and treatment.

After repeated disappointments and dismissals, it can be natural for people living with this disease to stop talking about how axSpA affects them – with their loved ones or even their rheumatologist:
- 1 in 3 people living with axSpA had not discussed their treatment goals with their doctor.

We aim to change the dialogue between people living with axSpA and their support system, from friends and family, to their rheumatologists and other caregivers.

Through Talk to be Heard, we hope to provide a space that:
o Inspires people living with axSpA to speak openly about their disease beyond symptoms
o Validates the experience of those living with axSpA, showing them that they are not alone and are part of a worldwide community
o Fosters confidence through community and encourages people with axSpA to have honest conversations with their doctors and loved ones

This campaign will kick off on the 7th of February 2022. We have 4 of our members that have taken part in this world-wide campaign. We will be launching in this 7 week program to Talk about being Heard!

Meet our Team

"None of us, including me, ever do great things. But we can all do small things, with great love, and together we can do something wonderful." – Mother Teresa

There are few words that can describe the hours and care of the team that support our organisation, it is often after hours, or in spare time that they have available.

Lauren Angélil
Vice Chairperson

Matthew Fah
Tech Guru Guy

Lauren Dally

Annie Brown

Meet your Province Team Leader

We are very proud to announce our provincial team leaders. In the next 3 months, we will have provincial get-togethers via Zoom, and we will celebrate World AS Day in your region. We will also use this platform to establish your needs and get to know you better. Thank you so much to each of you volunteering.

2 February  at 19h00 Pretoria
17 February at 19h00 Western & Eastern & Northern Cape
24 February at 19h00 Natal
10 March at 19h00 Gauteng
17 March at 19h00 Freestate (Pending Volunteer)
7 April at 19h00 Mpumalanga/Limpopo & North West

You can also meet your provincial team leader at our Meet the Crew meeting on the 27th at 19h00. 

Meet the Crew & General Members Meet & Greet Zoom Link

Kwa-Zulu Natal
Ishana Gangaram


24 February at 19h00 Zoom Link

Andrea Meyer


2 February at 19h00 Zoom Link

Mpumalanga, Limpopo & Northwest
Benita Kruger

17 March at 19h00 Zoom Link

Western & Eastern & Northern Cape
Suelita van Breede

Annie Brown


Free State


Physio Know your Spine Course

As a patient, it is good to know how your spine works. We going to be going into the itty gritty of our 6 main areas. We wil explain basics, so next time you have a pain in your body, you will understand where it is from. Corne van Eck, who is also on our medical panel, and the brain behind our exercise series, will come and chat to us. Make sure you save these dates. All sessions begin at 19h00 and will have a question and answer session at the end.

Go Look at our Exercise Videos
Voice of the Expert

Faranak is a Sport Scientist, Food Scientist, and a certified Low Carb/Keto Nutrition specialist. Her passion is in health and wellness through nutrition and sport with the strong belief that food plays a major role in people’s lives. Her aim is to promote a healthy lifestyle and prevent metabolic health issues through real food and nutrition without medication.

Faranak is the founder of Health Wealth Nutrition, working as a health and wellness professional helping clients to optimise their health and well-being through behaviour and lifestyle adaptations which can help them feel better and live healthier. She is passionate about general health, weight loss, lifestyle adaptations, and metabolic disease prevention.

Also enjoys working with athletes providing sport nutrition guidelines to help them reach their optimal performance. Faranak is an athlete herself, played basketball professionally, and have been involved with sport for many years. Health Wealth Nutrition uses the latest research and development to promote LCHF/Keto nutrition as a natural healing approach to optimise health and prevent metabolic health issues.

3 Feb at 11h00 Zoom Link
Make a Donation

AxSpA South Africa receives no statutory funding, and we rely on the generosity of our community to continue our work.

Your donation will help provide specialist support, advice and the most up-to-date information to help empower everyone living with axial SpA (AS) to manage their condition. It makes sure that everyone has somewhere to turn for support when they need it most.

Here’s how your donation to AxSpA South Africa can make a difference;
R50 can enable our management team to respond to a call or email and provide guidance and advice to anyone affected by axial SpA (AS).
R100 could help provide a pack of NASS guidebooks online
R150 could help to contribute towards developing more resources for our website
R200 could help by contributing towards the cost of one of our guest speakers

You may decide to make a yearly contribution, or make a monthly contribution. 

Our banking details are as follows:
Account Name: Axial Spondyloarthritis Association of South Africa
Branch Code: 632005
Account Number: 4100114993

World AS Day

World AS DAY is on the 7th of May, and this year we have two terrific events. We will be hosting a walk in each province, and then we will have a virtual get-together hosted by Lauren. Save the date for this one!

We are still looking for volunteers to become involved in our Association. We are looking for the following volunteers:
- Graphic Design Work
- Data Analysing
- Copy Writing
- PR & Media 

We are also looking for a Free State Team leader.

Please could you pop me a mail to [email protected] should you think you can fill these shoes. It will only be a couple of hours a month.


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