President’s report September 2018

Hello everyone, I bet you are all having a sigh of relief now that Spring is in the air, which means lots to do in the garden, be careful of your backs, I know I have just given myself a twinge or two from resting it all winter.

We had our AGM on the 29th of June and time has flown by since then. We have our 25 committee members, and two ladies Chris Carlyon, Palmerston North, and Lorraine Horlbrook Invercargill, who have stepped down. I would like to thank both Chris and Lorraine for all their work and support on the committee for the last couple of years. I wish them both well and good health for their future endeavours.

I would like to thank all the committee for all their hard work over the past two years and for staying on board for another round. A special thank you to Barbara and John Spavin for all their continued dedication to Scleroderma NZ by way of producing the excellent newsletter and website for us all. We are all very lucky to have them do this for us. Please help Barbara and John by sending in your special stories to help make this a community newsletter.

The 29th of June was World Scleroderma Day. Allan and Sandy Edmondson put together a celebratory dinner up at Tuakau, south of the Bombay Hills and it was enjoyed by many and especially attended by Linda Bell and friends from Hamilton.

We had a lovely bunch of people here in Wellington who went out for a celebratory lunch in Miramar Wellington and we managed to get up a display about Scleroderma at Wellington Hospital to raise awareness.

We have been busy completing another two surveys: one on heating your home and the scleroderma health survey. You will see the results of these two surveys later in the newsletter.

There are some serious concerns: 13% couldn’t afford to heat their home comfortably; 22% said they would go without things they need like food to pay the power bill; 7% could not afford to go to the doctor when they needed to this winter.
22% can only sometimes go to the doctor when they needed to.

These concerns I feel need addressing with some lobbying to the Government to see if we can get a heating subsidy for next winter. This will keep the committee busy the next few months.

The Health Survey drew attention to only 64 % of the responders not having a six minute walk test. I find this a concern because this is an easy non expensive accessible test which can give some important information for our ongoing care. I wish you all well and enjoy the lovely Spring just around the corner. Thank you all again for your ongoing support.

Best Wishes
Dianne and Gordon