I have just been lucky enough to attend the MPN Education Foundation biennial Conference at the Mayo Clinic in Scottsdale, Arizona, in a private capacity. I was one of two Australian MPN patients, accompanied by our partners.
It is impossible to summarise the whole conference in a few words. The tireless volunteer organisers from the MPN Education Foundation did a truly wonderful job, and provided an extremely hospitable, welcoming and professional atmosphere for all those who participated.
The 16 expert presentations, two panel discussions, and disease specific break-out sessions, were enough to answer most of my questions, and many more that I had never thought to ask. The expert presenters were incredibly generous with their knowledge and time, and joined patients during the breaks to answer individual questions, whilst trying to juggle their lunch and catch up with their colleagues. Exhausting doesn’t begin to describe it, even though we tried to have early nights, especially factoring in the jetlag and the 6.30am breakfast starts each morning, which we chose to reach by walking through the crisp 5 degree air from our desert hotel.
I think apart from the excitement of hearing of the research and developments in the pipeline, I was so inspired by the passion that was so evident in the presenters, and the thought that there are such wonderful people looking out for those of us with MPNs. They are incredibly knowledgeable, but the other message that came through loud and clear to me is that “its complicated” – a refrain used by many of the doctors when queried about particular scenarios. What I noticed is that they were not afraid to say if they didn’t know, or to admit that there IS a lot that they don’t know yet. During the question panels, it was also interesting that they didn’t always agree with each other, and they acknowledged that there may be trial and error, and a lot of careful judgment needed in both diagnosing and treating MPN patients. Treatment should be individually based on a holistic assessment of the patient including blood counts, but importantly symptoms and quality of life issues.
I was privileged to meet many of the wonderful presenters, including Prof Claire Harrison from the UK, Dr Richard Silver, Susan Leclair, and especially Drs Ruben Mesa and Laura Michaelis, who will be coming to Melbourne in April for the inaugural MPN Patient Conference in Australia, which will be co-hosted by MPNAA and MPN Advocacy and Education International.
Even with all those positives, probably the most special thing about attending the Conference in Scottsdale was meeting so many patients and their partners/ supporters, who were all willing and keen to share experiences, especially those whose posts and emails I have seen on various MPN fora.
For more details on the Scottsdale Conference, visit mpninfo.org.
Sue Taylor
