President’s Report February 2017

It has been a very unsettled summer so far and I am keeping my fingers crossed for some more heat for February.

We have had a small taste of it here in Wellington this week. It has been a busy time for Gordon and me on a personal note with four flower shows since September with our last one on the 4th & 5th of February, which was a begonia, fuchsia and dahlia show, a lot of work and

support from all the good folk in Wellington and Lower Hutt and beyond.

Barbara Spavin did very well in her flower and citrus classes too!

Judy Trewartha has been very busy raising funds for Scleroderma NZ with her beautiful quilt-making – a huge thank you to Judy for all her efforts, which are very much appreciated, and to all of you out there who supported buying raffle tickets.

Gordon and I were one of the very lucky ones to receive a winning lap quilt. It is full of lots of cheerful colours and heart-filled shapes, which makes it a very comforting quilt indeed, and it will be treasured always.

2017 Seminar

We are looking forward to seeing as many of you as possible at our seminar on the 6th of May here in Wellington. We have a very good line-up of speakers, good food and of course a perfect chance for us all to meet up again.

We have World Scleroderma Day coming around the corner too, this year our Wellington group is joining the Palmerston North group in an art exhibition at Square Edge in Palmerston North from 21st of June to the 18th of July. Wellington will also have a display at the Wellington Hospital between 26th of – 30th of June. We will be raffling a quilt to raise funds for an

MRI machine at Wellington Hospital.

This year my main focus will be starting a lengthy process with the health system for the common good of scleroderma patients in regards to developing a national monitoring programme. This will be a big experience I’m sure, but it I will have a very positive outcome for us all.

In the mean time I am very fortunate to have a GP and specialist immunology team to help monitor my bloods for kidney function and blood pressure.

This means every three months I will head off to the GP for the checks, this is interim, between my usual annual specialist checks. Some of you may already have these checks due to the medications you are on, but some of us are stable and may not be on any monitoring tests between specialist visits.

I highly recommend that you organise this with your GP if you are in this situation. As you all know it is very important to keep an eye on our blood pressure and kidney function along with liver function, thyroid etc. A good relationship with your GP and practise nurse is worth its weight in gold.

On the 28th of February it will be Rare Disease Day check out for details.

Thank you all again for your ongoing support and friendship, we have a special caring group, which is much appreciated.

Looking forward to seeing you all in May.

Take Care and Good Health to you all.