Chairman's Message

Chairman's Message

Mark K 2

Welcome all to what feels like a whole new way of life living with COVID-19.  I trust everyone is staying safe and well, maintaining physical distancing and if you are like me, self-isolating.

You will note I used the phrase physical distancing and you may have heard the term social distancing used in the media etc. We want everyone to maintain a minimum of 1.5m from others, regularly wash your hands for 20 seconds, remain vigilant and adhere to government guidelines.

However, we still want everyone to stay socially connected. As we know GBS/CIDP can be isolating.  Initially it is hard enough for the patient to understand the impact of living with a rare condition and then how do you explain that to your partner, family and friends and articulate those strange sensations, the pain, the fatigue, the things you can do and/or cannot now do either the same way or not at all without unduly increasing their level of anxiety.

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Chair Message June 2020

on . Posted in About Us

Welcome all to what feels like a whole new way of life living with COVID-19.  I trust everyone is staying safe and well, maintaining physical distancing and if you are like me, self-isolating.

You will note I used the phrase physical distancing and you may have heard the term social distancing used in the media etc. We want everyone to maintain a minimum of 1.5m from others, regularly wash your hands for 20 seconds, remain vigilant and adhere to government guidelines.

However, wMark K 2e still want everyone to stay socially connected. As we know GBS/CIDP can be isolating.  Initially it is hard enough for the patient to understand the impact of living with a rare condition and then how do you explain that to your partner, family and friends and articulate those strange sensations, the pain, the fatigue, the things you can do and/or cannot now do either the same way or not at all without unduly increasing their level of anxiety.  Then we now have COVID-19 a highly contagious virus, just the last thing you need when you have a rare, complex auto-immune condition or in my case two auto immune conditions, immune supressed and immune modulated, not unlike many with GBS/CIDP.

With these challenges it is vitally important we stay socially connected as a support network.  As such, when the pandemic was called Ken and I canvassed how we would continue to hold our general meetings and particularly the AGM.  Enter Zoom meetings and without going into the nuts and bolts of all the background conversations we held our election remotely via email/mail with Mary graciously volunteering to act of electoral officer.  The Committee was returned. By all accounts we miss meeting in person yet there was consensus amongst the Committee, we all did well with this new technology.  Moving forward we are canvassing the possibility of utilising Zoom to include our Visitors Forum segment of our general meetings; stay tuned.  Living with GBS/CIDP does help build resilience so the challenges of a bit a new technology won’t hold us back.

2020 will go down in everyone’s life as a signature year; COVID-19 will be ensconced in our memories.  Yet, it is also the 30th anniversary year of the GBS Association of NSW Inc.  Back then patients and health professionals recognised there was much more that could be done to support GBS/CIDP patients, family and friends not just in a health setting but in everyday life.  Hence, not unlike the complexities of living with GBS/CIDP the Association was formed.  A number of those luminaries are still with us, casting a learned eye over the role of the Association, as they have done for decades.  We honour their vision and commitment to improving the quality of life of people living with GBS/CIDP and look beyond 2020 to new and innovative strategies such as more coffee catch-ups; that social connection.

At this time, it is our intent to celebrate this milestone alongside our final meeting for 2020.  What form this may take is very much contingent on the impact of COVID-19 on our lives, our freedoms of movement and association; stay tuned.

In closing, some of you may be aware I am now one of two community representatives within NIGAC (National Immunoglobulin Governance Advisory Committee). Generally, the Committee seeks to develop improved strategies for the use of IVIG and in particular patient experiences, knowledge and self-management strategies.  I have participated in a number of online meetings with some patients with very rare conditions requiring IVIG treatment and health professionals across Australia.  Whilst it is only early days we hope to greatly improve the consultation and participation of patients, carers and support networks and develop a much better feedback loop placing the patient at the centre. All too often patients are left in an ongoing information vacuum and there are many reasons for that. We seek to remedy this.

Stay well and stay safe.

Cheers,

Mark.