This year’s UK Patient Convention was held in Chester and was combined with the ITP International Alliance meeting. It was a truly global event with speakers and patient organisations from the UK, USA, Brazil, India, Denmark, Italy, Netherlands, Norway and Sweden.
Here are just a few of the many highlights from this fantastic day.
Social Media was on the agenda, with a look at how many people we are now reaching on social platforms such as Twitter, Facebook and Instagram. The ITP Support Association Facebook page has over 5,000 followers from across the globe and has become a place for discussions and story sharing. Users add their fundraisers to the page, ask each other questions and most importantly, provide each other with support. It’s incredibly important for patients to have a place where they can voice their thoughts and concerns at any time of day or night. Just chatting with a fellow ITP patient can have a hugely positive effect.
The presentation on platelet counting provided insight into how far medicine and science have come. With the arrival of the Coulter machine in the 1970s, laboratories were able to process a vast amount of samples and provide results much quicker – but even now, lab technicians are still working 5 days a week and long into the night to cope with the sheer volume of results needed for patients. The more modern Beckman Coulter machine will be the way forward – but with a hefty price tag, not all labs can obtain one.
Haroon Miah presented on the UK Adult ITP Registry, which collects data from patients throughout the country. The aim of the registry is to amass enough data to help doctors better understand ITP, find possible clues to causes, and search for possible genetic links. There is also a sub-study being conducted right now investigating ITP in pregnancy.
Paula Bolton-Maggs spoke about the ITP Forum that was established in 2011. The Forum works hard finding ways to improve patient care and further educate healthcare professionals and the public about ITP. The Forum meets twice a year and has proved incredibly successful in bringing specialists together to share and learn from each other. There is now a much better understanding of ITP for both the medical world and the public thanks to the ITP Forum.
Other subjects covered during the convention included Cindy Neunert’s talk about Pediatric ITP, with 5 in 100,000 children developing the disease.
An exciting development that was highlighted this year is the ITP Pocket Log App (UK Only)– on this app patients can log their symptoms, test results, medication, add notes and appointments and read more about ITP in the fact section. There will be a new version of the app available from next year and ITP Australia has reached out to the developer to see if this app will be available in Australia in the future.
If you wish to see the presentation slides from all of the incredible speakers, they can be found right here
Here in Australia, we recommend the ITP for Aussies Facebook Group. It’s a closed group so all discussions are private and amongst patients and family members. You can find it in our helpful links section of the ITP Australia website – www.ITPAustralia.org.au
ITP Australia is hoping to hold its first ever Australian ITP Conference in 2019 – so keep your eyes peeled for further announcements. If there are any particular areas or topics that you’d like to see included in the first conference, please get in contact with us at info@ITPAustralia.org.au.