Latest News HMSAware2020 Round Up, thank you and goodnight! On Monday, we looked at the launch of the original campaign back in 2016. At the time we had support from a number of Westminster MPs for our Early Day Motion, it's surprising actually how many of those MPs are still in their seats following the various Westminster dramas and two general elections over the last four years. It's well worth taking a look to see if your MP was one of those that signed, and if so contacting them to see how they have/intend to support their constituents with the issues we raised - many of which are still relevant now and will be for many years. We also looked at ways to #GetConnected, to other organizations, healthcare professionals and peer support. Four years later the subject has been raised a number of times in the commons, and Healthwatch Calderdale are still working with patients from other NHS areas to investigate delayed investigation, diagnosis and intervention and the impact that has on people with hypermobility issues, their families and the teams caring for them. On Tuesday we looked at the 2017 campaign, with the imminent 2017 Ehlers-Danlos Society nosology dominating online discussion of hypermobility (the criteria had been announced, but not yet released), so we looked at the important field of Differential Diagnosis and some of the conditions that can look very much like one hypermobility syndrome, and later turn out to be another altogether! We also looked at the real-life story of one of our Osteogenesis imperfecta members, Julie Ann Wednesday covered the 2018 campaign, during which we took questions from our membership and followers and compiled the answers to form FAQ (which we're now updating, unsurprisingly most of the questions are still more or less the same, but some of the answers have changed a little!) including by far our most frequently asked question - "Is hypermobility rare?" Thursday looked at the 2019 campaign with its #HMSActive theme, we were blown away by the responses we got to it last year and again this year - our followers and members do all kinds of weird and wonderful things to stay active. Dance is very popular (see our postcard from Nottingham later in the e-mail), swimming is, of course, a leading activity as it is so much kinder on the joints than most exercises, one follower introduced us to an activity we didn't even know you could get involved with, apparently, there's a whole group of people out there climbing trees together for fun! Friday saw us take a look at the responses to our #2020Hindsight" campaign question "If you'd known then what you know now, what might you have done differently? We've been blown away by some of the answers, while many discuss all the themes you'd expect Relationships, Exercise, Social issues, changes to career or lifestyle and so on, we were stunned at the insightfulness of others. So much so we're going to leave that question running, here at the HMSA we're all about sharing the benefit of our experience so that those recently diagnosed can take shortcuts to manage their condition. For many of us diagnosed in later life, with hindsight, we can clearly see how we'd have approached sports, doctors, family members differently if we'd been aware of the impact it would have later - we can use these experiences to help those diagnosed in childhood to assert their need to pace, or avoid deconditioning for example in ways we weren't able to, while they're still young enough not to need to unlearn decades of bad habits! "I wouldn’t have kept my pain such a secret. I wouldn’t have “faked well” to the point that it burned me out. I “faked“ wellness and hid pain so convincingly that now those just outside of my closest circle don’t understand what’s wrong.People would get the very best I had for a day or a few hours and then I would hide and recover for days, weeks or months." "I loved sport too, played about 4 different sports and some for my county but they ultimately caused my body to give in a little too soon. I don't regret playing for one second but, maybe would not ignore some niggles and issues I was experiencing x" "If I had known what was in store for me I would have become a Pilates teacher in my 20s and would have strengthened up my body before it gave out on me!" I wouldn’t have kept my pain such a secret. I wouldn’t have “faked well” to the point that it burned me out. I “ faked “wellness and hid pain so convincingly that now those just outside of my closest circle don’t understand what’s wrong. People would get the very best I had for a day or a few hours and then I would hide and recover for days, weeks or months. Hard habit to break! These are just a few of the hundreds of responses we received, we're still collating the remaining answers and our social media team are busily (with breaks) beavering away on incorporating them into a video, which frankly we can't wait to see! Do you have any #2020Hindsight to share with us? contact us with a submission via any of our social media platforms or contact [email protected] - you can even submit your experience under the real-life stories blog on our website - if you'd like to remain anonymous just let us know and we'll have one of the team publish it for you. :) We'll be taking a #SelfCareSunday break now (keep up on our social media from 7pm), so for now, thank you and goodnight!