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A little about us…

KiwiCRPS Charitable trust is a New Zealand run charity with an aim to provide support, awareness, friendship and education for those in New Zealand who are living with or have loved ones with CRPS. 

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.  

What is CRPS?

Complex regional Pain syndrome is, as its name suggests, complex!

​In its most simplest explanation, it is continuing pain out of proportion to the severity and normal time frame of the event that caused the initial pain. As well as pain it involves sensory, autonomic, motor and/or tropic symptoms.

​A diagnosis of CRPS is based on the most current clinical guidelines provided by the International Association of Pain (IASP) as there are no current definitive diagnostic testing. This can mean that there is often questions around the original diagnosis, and a subsequent lack of treatment.

​IASP has defined two types of CRPS, type One and Two. Type one arising from a variety of risk factors, including trauma and soft tissue injury. Type two however, arises from a nerve injury.

Our story

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, KiwiCRPS.

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 KiwiCRPS 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.

Our future

We began negotiations recently with other online CRPS support groups based in New Zealand. KiwiCRPS 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

Support groups

We understand that CRPS can greatly limit your ability to get out of the house and deal with social interactions, thus increasing the feelings of isolation. To help combat this our support groups are nationwide and are conducted primarily through Facebook, allowing us to connect to you anytime, anywhere. 

Outreach

We find that face to face meetings, where possible, are an invaluable tool and we do our best to facilitate regional meet ups in selected areas of the country. 

Further information on these can be found in the events section of the website

Mental Health

Unfortunately with CRPS our main symptom is, of course, is pain. This makes every little thing you do in your 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. 

​Despite this we are not professionals. 

​If you are experiencing depression or anxiety we will do our best to support you. This could mean as little as making sure a senior member in your area pops by to have a cup of tea, or directing you to people and organisations who are more qualified to help. 

Help us continue our work in the CRPS community

To fund our charity, specifically our conferences, and to further awareness and research we have a number of small items available for purchase.

​All of our items for sale are made and donated by members of our CRPS community.

​If you would like to donate we also have a give a little page.