Welcome to AutoImmune New Zealand
Developing AutoImmune NZ, was a personal response to being diagnosed with an AutoImmune disorder back in 2009. At the time of diagnosis, there was very limited ‘accessible’ and ‘ready to share’ information here in New Zealand, about what AutoImmune disorders are, how they were being treated, and certainly nothing about the more recently developed ‘therapy approaches’ underway globally.
AutoImmune disorders damage almost every system in the body. Currently there are over 100 diseases with AutoImmune etiology. They target women 8 x more than men, so there is likely a gender/hormone link, and globally, they de-mobilise more women than cancer and heart disease combined. But AutoImmune New Zealand is hoping that from this platform we can source new therapies/models/medications and along with developing friendships and community and find a better balance in the way as we learn to live with these disorders.
How this story started …. building a social community..
When I was initially diagnosed I felt isolated. The professionals I trusted to disseminate medical knowledge left a ‘void’ I was left to shop around and fill.. My specialist offered limited medical explanation (outside her speciality) of what AutoImmune disorders were but assisted with excellent immediate care and management of my symptoms. I found I was given limited information of what medication I was prescribed (as effective as it has been) nor was I advised how these (in my case, retired cancer-therapy) drugs work long-term.
My questions regarding lifestyle and health changes were not considered to be effective therapy. Due to medical protocols (confidentiality) I was unable to be put in touch with other New Zealander’s with an AutoImmune disorder. So once I was out of hospital I found my feet, regained my health and began to develop the idea of building something that really would be helpful … what people diagnosed with an AI really needed .. friendship, community, understanding, knowledge and the courage to look at things that challenge us, a little bit differently.
That was my driver .. so with a very basic understanding of the multi-faceted value in connecting with others, in sharing information, in becoming (and remaining) proactive, in the face of adversity, I set out to learn how to write code and build a website !!, in the hope of developing a new kind of ‘social’ platform to connect with others going through this journey.
With multiple, (but de-franchised) AutoImmune support communities already well established here in New Zealand, such as: NZ Diabetes, Lupus New Zealand, the MS NZ society, the NZ ME society, Arthritis NZ .. what was lacking was a new model of support community. One that is open and inclusive, one that sources reputable knowledge about the causes of Immune dysfunction and evidence-based information for anyone going through a diagnosis and life-long management of any Auto Immune disorder.
So with hours, and weeks (and now years) of research, here is AutoImmune New Zealand. I hope it brings people together, for dialogue, sharing of experiences and knowledge, for new friendships. I also hope it brings greater awareness of, and understanding for those living with an AutoImmune disorder.
I also seek to inspire people to be more ‘autonomous’ in their health and well-being..
As more research comes through, it is evident that taking charge of your health and recovery is not only possible, but often brings about dramatic results. By getting to grips with the relationship between what we think, how we move and what we choose to eat brings an awareness that we CAN alter our genes and get back to health. Eating clean and altering your lifestyle in small ways, brings big, big rewards. I have repeatedly read about the success of going: gluten free, dairy free, upping Vitamin D, upping dietary fats (good fats – avocados, coconut oil, olive oil, fish oil, nut oils), increasing sun exposure, making small lifestyle changes (yoga, walking, connection to others) and how these positively impact the immune system. Relying solely on doctors and drug companies to get you well .. is, well, non sensible to me. But naturally, as with any new way of seeing things, and thinking things, and learning, comes questions, and for me it was regarding: the current/overused model of heavy reliance on ‘pharmaceutical fixes’ (masking the causes) vs. considering safer long-term, whole body, immune supportive, approaches to my recovery and future well-being.
AutoImmune New Zealand hopes to achieve three goals..
* To build connection, community, support, engagement, dialogue and understanding.
* To build a ‘knowledge bank‘ on AutoImmune disorders, a rich ‘resource’ available to everyone.
* To build relationships and collaborate with specialists in the fields of: science (research), medical (immunologists) and integrative health professionals (naturopaths, GP’s, Nutritional Coaches, Personal Trainers).
Spreading the word and helping this platform reach its potential ..
Building the site was one thing (part 1), it now requires marketing to ‘spread the word’ about our community and site. (Part 2) of the plan is well underway with the wish to invite practitioners (Integrative/Holistic) to contribute short pieces which they write about AutoImmune disorders…you can find their contributions on page 10 (Integrative/Functional/Nutritional practitioners…
(Part 3) is to develop a list of recommended professionals who may be helpful in your recovery and maintenance… This is really important. I am often asked who I can recommend .. and whilst I don’t have personal experience with the specialist on the list, they have been recommended as helpful. The list is on the page called: https://autoimmune.org.nz/autoimmune-nz-contacts-for-specialists/
Community involvement and voice ..
I hope you find this site interesting .. let me know if there is content you would like to see added. If you would like to be added to the ‘friends of AutoImmune NZ’ page, then email me a photo and as much (or as little) information about yourself, and I will add you online.