President’s Report August 2017

Hello all, well we have great hints of spring. The daffs are out and blossoms are standing out amongst the green native forest here in Wellington, along with quite a few spring bulbs, giving lots of vibrancy.

Our membership is growing. We now have 144 members from North of Auckland to Invercargill.

The new Christchurch group is doing well and meeting every couple of months and the Auckland Central group had their first meeting on the 27th of August. It will also meet every couple of months. Well done to both groups for getting together and supporting each other.

Palmerston North, Invercargill, Hamilton, South Auckland and Wellington are all meeting regularly and supporting their members very well.

For World Scleroderma Day the Palmerston North Support Group worked hard at putting together a vibrant art exhibition at Square Edge Art Gallery, which was held over a period of three weeks. Catherine Thompson did an interview with the Manawatu Standard newspaper telling her story, along with a video clip. It was a brave thing to do and was much appreciated by us all. We gained some new members from the coverage. A couple of us from Wellington joined in with the art exhibition, which was an absolute pleasure.

The Wellington group put up an educational display at the Wellington hospital over the week of the 29th of June and managed to attract a few people who were interested in our books.

Gordon and I have just completed an International literature review on monitoring for renal complications with scleroderma. It’s now in the hands of Dr Rebecca Grainger. She said it reinforces the need for home blood pressure monitoring. There will be some advice coming about how often this should be done.

We sent a letter to the health spokesperson, of each major political party, asking them:-
“Would your party ensure that scleroderma patients are cared for with the best monitoring systems, and the most effective drugs, to help extend these patients’ lives so they live the best life possible?”

We received a couple of acknowledgements from the parties and a letter from the office of Dr Jonathan Coleman, the Minister of Health, saying that he was getting advice from his officials.

A big thank you to Barbara and John for their continued support with the production of our wonderful newsletters and web site and to all of you out there for your support of Scleroderma New Zealand.

The aim of the society is to work together to benefit and support all people in New Zealand with scleroderma, and their families and caregivers. We’re here to provide information about scleroderma and as much practical help as possible.
Please feel free to contact me any time if you need any help or someone to talk too. I can also link you up with supportive people in your region.

Scleroderma New Zealand has a phone tree with people in different regions around New Zealand who have offered their contact phone numbers to help support others. You can contact me and I will put you in contact with a local person.

If you would like to be on the phone tree list please let me know.

Take care all of you and many thanks again for all your support. You are all wonderful people.