Updated: May 30
May 2023. This page is no longer regularly updated, many of the resources to which it points have closed (UKHSA monitoring pages and the NHS Covid app, for example) as the virus transitions from Pandemic to Endemic. Post-viral symptomatic hypermobility is nothing new, and as we predicted over three years ago many hypermobile people have become symptomatic following a covid infection. If you're among these people, you're in the right place, your hypermobility 'counts' and we're here for you. Long-Covid and symptomatic hypermobility also share many common features, our resources, including a video of hints and tips from Dr Bull and a recent research article can be found at https://www.hypermobility.org/post/long-covid-new-research
Pandemic emergency resources.
The HMSA would like to reassure our followers and members that due to our operating structure (with all team members working remotely from home) our day to day work should not be overly affected by the current pandemic, so you're going to have to put up with a largely Business As Usual approach from the team. That said we are appealing for financial help. If you can donate, please do.
Given that COVID-19 is so new, there is little clinically evidenced data available for people with particular illnesses and as patients ourselves we know how unsettling not having answers can be, but the science is evolving rapidly. As usual, we would strongly suggest that anyone claiming they have all the answers should be treated with extreme caution. This page is updated regularly. International reporting. First and foremost, the World Health Organisation: https://www.who.int/emergencies/diseases/novel-coronavirus-2019 EULAR: https://www.eular.org/eular_guidance_for_patients_covid19_outbreak.cfm The Covid-19 Global Rheumatology Alliance are conducting a patient survey here Of course, it's all very scary, we're not going to pretend it isn't, or suggest that everything is going to be just fine. Rather than issue a sweeping statement we've collated a number of credible resources we have found useful, and think others might find helpful - we will add to these as further responsible and accurate information is published. UK Specific guidance. UK.Gov info on social distancing: https://www.gov.uk/government/publications/staying-alert-and-safe-social-distancing NHS111 Online tool: https://111.nhs.uk/service/covid-19 Public Health England Covid-19 blog: https://publichealthmatters.blog.gov.uk/2020/01/23/wuhan-novel-coronavirus-what-you-need-to-know/ Health Protection Scotland: https://www.hps.scot.nhs.uk/a-to-z-of-topics/covid-19/ Cymru - Public Health Wales: https://phw.nhs.wales/topics/latest-information-on-novel-coronavirus-covid-19/ NI Public Health Agency: https://www.publichealth.hscni.net/ All NHS Apps and most social media apps now also link to the most recent local information. If you're unsure, just ask - we'll do our best to find an answer for you, though please note that your primary physician may be the only person able to advise more specifically. UK Benefits: https://www.turn2us.org.uk/get-support/Benefits-and-Coronavirus Exams and Grades: https://www.gov.uk/government/news/how-gcses-as-a-levels-will-be-awarded-in-summer-2020 Other organisations with helpful information: Chartered Society of Physiotherapists: https://www.csp.org.uk/conditions/managing-pain-home VersusArthritis: https://www.versusarthritis.org/news/2020/march/coronavirus-covid-19-what-is-it-and-where-to-go-for-information/ PoTSUK: https://www.potsuk.org/news/115 AnxietyUK: https://www.anxietyuk.org.uk/blog/health-and-other-forms-of-anxiety-and-coronavirus/ https://www.anxietyuk.org.uk/blog/covid-19-and-anxiety-part2/ HDCT Specific advice: This hard to come by as the disease is so new that there is little clinical evidence yet with which to determine risk, prevalence and outcomes, however a number of organisations have made the following available re particular conditions, we'll add more as we find them: Osteogenesis imperfecta: https://oif.org/coronavirus2019/ 19/3/2020 17:00 GMT https://mailchi.mp/oif/covid19meeting Marfan Foundation: https://www.youtube.com/watch?v=B0EK7WONSRU&feature=youtu.be https://www.marfan.org/about-us/news/2020/03/16/new-statement-regarding-covid-19-and-genetic-aortic-conditions-31620#.XnNIiqj7TDc Marfan Trust: https://www.marfantrust.org/news/marfan-trust-statement-on-covid-19 EDSUK: https://www.ehlers-danlos.org/news/eds-and-coronavirus-covid-19/ vEDS (Annabelle's Challenge): https://www.annabelleschallenge.org/covid-19 Charcot Marie Tooth: https://www.cmt.org.uk/coronavirus-covid-19/ Of course, having a hypermobility syndrome offers no protection against other illnesses so we've added the following resources for people with common conditions that we know increase their risk, again - we'll add more as and when reliable information becomes available: AsthmaUK: https://www.asthma.org.uk/advice/triggers/coronavirus-covid-19/ DiabetesUK: https://www.diabetes.org.uk/about_us/news/coronavirus CancerReasearchUK: https://www.cancerresearchuk.org/about-cancer/cancer-in-general/coronavirus-and-cancer Downs Syndrome: https://www.downs-syndrome.org.uk/news/corornavirus-information-resources/ There are also some fabulous initiatives to help people who are self-isolating, anxious, affected by the unavailability of carers and so on. We've linked to some of those here, and again will continue to add any new ones that could be helpful. #ViralKindness spreadsheet (googledocs) We cannot verify these external organisations as DBS checked etc. Please take sensible precautions when interacting with people online and protect your personal safety as a priority. Local support groups are springing up on Facebook, Next Door, and on other social media platforms with the capacity for groups. https://docs.google.com/spreadsheets/d/18P898HWbdR5ouW61sAxW_iBl3yiZlgJu0nSmepn6NwM/htmlview?sle=true#gid=1451634215 Our social media, helpline and general enquiries teams have access only to this information and that which is to be found on reputable news/healthcare websites. We're not able to advise further on individual cases, but can reassure and signpost, so if you're frightened, please do get in touch. If you're one of those who aren't worried, that's great - please look out for your friends family and neighbours who may not be so secure. :)