In May this year, people who are both a patient and patient advocate or representative came together in Den Haag, in The Netherlands. We came from about 15 different countries. I had not met one of them before arriving there, and yet I felt immediately at home.
Although we come from different countries with different languages, cultures and healthcare systems, we face similar challenges as MG patients with the multidimensional impacts and the overall burden of MG, and as PAOs, including aiming for equitable and timely access to treatments. Like us in Australia, many of the patient organisations in Europe are also run by patients for patients, and the work we do is making a positive difference for MG patients.
For nearly 2 days, we discussed and agreed on some of the most pressing unmet needs within MG patient education and how we can work together on actions. We shared ideas for educating and empowering patients including tools, resources and apps. We also considered how to ensure we (patients) are speaking the same language as clinicians, including how to best discuss our concerns and key questions to ask, and how we can better integrate allied healthcare to create a holistic landscape for our care.
Some of these areas are already included on the MAA website: https://myastheniaalliance.org.au. And we are always working to consider how we can best support our patient community in Australia. The ideas are many, but we do need people to help make them a reality. So, I strongly encourage you to think about volunteering your time and skills with us, where and when you can. This could be helping out on one project or just one hour a week, it is up to you.
Why volunteer… volunteering is often about helping others, and on top of this, volunteering as a patient with lived experience is meaningful and can give you a real sense of purpose.
Personally, having been diagnosed at 8 years old, Myasthenia Gravis is with me for most of my life. I faced quite a few challenges with my MG as a child, a teenager and then young adult, but ultimately, I had a positive experience in achieving a stable condition and living well with my MG. I first got involved as a volunteer with the hope that this can happen for all MG patients.
In the 5 and a half years I have been volunteering with MAA and MGNSW, I have had the opportunity to not only work with a dedicated team of fellow MG patients, but I have also had wonderful opportunities to learn, develop my own skills and knowledge, and engage in meaningful work, to ultimately improve what it is to live with MG.
Reflecting on being a MAA board member, I realise I have undertaken quite an amazing range of activities:
- Facilitated multiple research projects and studies, and I value this because building our evidence base, especially with patient reported outcomes, is so important for the patient voice.
- Attended many insightful webinars and collaborative meetings with stakeholders, including clinicians, and I have learnt a lot about the disease I live with.
- Drafted submissions for a range of national health and medicines policies and I feel that this is really an opportunity to play a part in the bigger picture.
- Contributed to organising and coordinating the national MG patient conference in 2023 and national awareness campaigns.
- Attended conferences and events in Sydney, Canberra, Brisbane and Adelaide, and this year, we took our work internationally to the MGFA PAO Summit and International Conference in The Hague, The Netherlands.
- And I have the absolute pleasure of meeting and speaking with fellow MG patients, listening to your stories and understanding what having MG means for you.
There are already more activities in the pipeline before the end of this year! So, if you’d like to have a chat about being involved, please reach out to us today at support@myastheniaalliance.org.au
Finally, I wish to acknowledge the financial support of the Myasthenia Gravis Foundation of America (MGFA) and their sponsors, which made it possible for me to participate in the amazing PAO summit and international MG conference on behalf of the Australian MG patient community.
Natalie Windle
MAA Secretary/MGNSW President
The MAA is fully volunteer run and is solely donation funded. Please consider donating. It can be done via the website https://myastheniaalliance.org.au/
