Nau mai haere mai e te whānau me nga hoa.
A very warm welcome to our website.
We understand that a diagnosis of Complex Regional Pain syndrome is a scary one. If you, like the majority of us, did a quick web-search after leaving the doctors office, chances are you found horror story after horror story about CRPS.
It is our mission to be aware of the realities of CRPS but to do our best to be here as a positive force to support you and your family through this time.
The early days
We began as four individuals with CRPS in separate regions of New Zealand. As there was a lack of information regarding New Zealand specific, health system advice and no national support group that connected all of us we joined forces to create and online support group, Kiwi CRPS.
Over time other people began applying to join the support group, one of those, was running an existing separate group for parents of children diagnosed with CRPS. Adding her to our Kiwi CRPS family expanded our support groups, and thus added the parents group.
Kiwi CRPS had its first gathering in 2013. It was during this weekend that we spoke about what it was that we personally needed from a support group, and as a support group what more we could be offering. Through this the Charity was born.
The second important step to come of this gathering was seeing the connections made between our children and partners. We realised how vital it is for the families involved in the day to day caring of those with CRPS to also receive support.
We began negotiations recently with other online CRPS support groups based in New Zealand. Kiwi CRPS is about to become an umbrella charity that will ensure all those with CRPS in New Zealand are covered by the charity. This will help us become a tighter knit community which in turn helps all of us, ultimately when we are talking about awareness and support we become a greater force as one.
What we do
Unfortunately with CRPS our main symptom is, of course, pain. This makes every little thing you do in your life just that much more difficult. However, we understand that taking care of your mental health can be as important as dealing with the pain, and is a vital part of getting through each day.
As a support group there is little we can do, aside from advice, to help the physical aspects of CRPS, and while we strive to see the positives in life, we are here to support you when times are tough.
The support group members are not health care professionals.
If you are experiencing depression or anxiety we will do our best to support you. This could mean making sure a senior member in your area pops by to have a cup of tea either in person or online, or directing you to people and organisations who are more qualified to help.
Color The World Orange
Below are photos shared with Kiwi CRPS taken from around New Zealand for Color The World Orange, 6 November 2023.