The Symptomatic Hypermobility | EDS HSD I Neurodivergence I Autism I ADHD I Dyspraxia I TS + Charity |
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Welcome to our March newsletter! 🌻 What a wonderful month we have had here at SEDSConnective - with the highlight being the launch of the world's first Neurodivergence Day on the 11th! It has been such an honour to be able to launch such an important day in the calendar - and from this we have received a lot of support and recognition from other charities, supporters and members. Thank you to everyone who helped promote and share this awareness day. Here's what else has been happening here, and what we are looking forward to in April... |
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Neurodivergence Day - 11th March We launched the world’s first Neurodivergence Day on 11th March 2024. The day will now be an annually celebrated day, seeking acceptance for the neurodivergent community. It is also to be known as Neurodivergence Affirming Acceptance Day (#NeuroInclusion #NeurodiversityDay) We shared an official press release and reached out to our online community to join the conversation on social media. We believe in neuro-inclusivity and are addressing the lack of community days celebrating neurodivergence alongside the likes of others, such as Neurodiversity Week (18th-24th March 2024). | | |
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Is joint hypermobility linked to self-reported non-recovery from COVID-19? We are delighted to share recent publication (released 20th March) by BMJ Journals that suggests that people with joint related hypermobility might be more prone to long COVID, and may have not fully recovered. The study looked at over 3,000 participants in the Zoe Health Study and found that people with hypermobile joints were "....30% more likely to be affected by long COVID symptoms..." Our SEDSConnective Patron, Dr J Eccles, lled the study with researchers from BSMS and King's College London. "Although the study doesn't prove that hypermobility caused their illness, there is a plausible mechanism through which it could contribute to symptoms..."
Dr J Eccles (The Guardian). This study is key and highlights what we have been saying for years. Congratulations to Dr Eccles and all who worked extremely hard on this study. You can read the full study below. Image Credit: The Guardian.
Photograph: Catherine Falls Commercial/Getty Images | | |
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Neurodivergence in Education conferences We were delighted to be represented by our Chair Jane Green MBE at two events for education. One was at Springfields academy in Wiltshire for their neurodivergence day and network event. The second event took place in London for Westminster Insight on their Neurodivergence in Education conference with key speakers the neurodivergent Tom Hunt MP and NASEN Chair AnnaMarie hassall MBE. Jane Green MBE presented on Social, Emotional, Mental plus the often missing physical wellbeing (symptomatic hypermobility fatigue, dizziness, injury or illness) and the confusion around Emotional Based School Avoidance issues in education and health arenas. |
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Research Project from Staffordshire University We have been invited to share this new BAME research project for HSD, hEDS diagnosed or those who are self-diagnosed. Participants should also meet the following criteria: Have a clinical or self-declared diagnosis of hEDS/HSD. Older terms including joint hypermobility syndrome (JHS) for HSD, and EDS-III or EDS Type 3, or EDS hypermobility type for hEDS, are permitted due to variations in categorisations of EDS and joint hypermobility syndromes over time.
What will happen if I take part? You will take part in a study lasting approximately (30) minutes. This will involve answering an online survey with open-ended questions regarding your personal experiences of living with hEDS/HSD, before being debriefed where you will be signposted to relevant charitable organisations such as Samaritans and Mind, if you have been affected by the study due to the sensitive topics being discussed. To find out more or register to participate please contact: h026181k@students.staffs.ac.uk | | |
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Research Project from University of Surrey Study for parents/guardians of individuals with Ehlers-Danlos Syndrome (EDS), Hypermobility Spectrum Disorder (HSD) - looking at their quality of life and perceptions of the social support that they receive. Requirements to take part: What the study will involve: Filling out an online questionnaire, which should take approximately 15-20 minutes. You will be asked questions surrounding your quality of life and the social support that you receive. For more information or to participate in the study please contact: ec00864@surrey.ac.uk | | |
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Dyscalculia Webinar - 18th April We are delighted to be welcoming Cat Eadle, Co-Founder of the Dyscalculia Network who will be sharing a little about dyscalculia with members only in a live webinar on Thursday 18th April from 7pm. All are welcome to join the webinar, and more details about how to register for the webinar can be found on our Events Page or below.
We look forward to seeing you there!
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Autism Acceptance Day - 2nd April April is Autism Awareness Month and on 2nd April it is Autism Acceptance Day. This is an important day in our calendar, and last year we lit up many Sussex landmarks such as the Brighton i360 and Crawley Mall Gold.
This year we will be sharing our information about autism written by our chair & founder, Jane Green.
Jane was recently interview for Channel 5Live News with Dan Walker about her autism diagnosis, and the ways in which employers can help support staff.
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IBS Awareness Month - April April is IBS Awareness Month and on the 19th it is IBS Awareness Day. During the month, we will be sharing our advice to help relieve the symptoms of Irritable Bowel Syndrome, if you have Symptomatic Hypermobility. Symptomatic hypermobile people with IBS may experience symptoms like bloating, cramping, stomach pain and/or toilet troubles. Keep a look out on our social media pages during April for plenty of advice and tips (non medical) on how to manage your symptoms. | | |
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Thank you for your ongoing support and commitment to our charity. Please do let us know if you have a story you'd like to share with us. You can reach us at www.sedsconnective.org and general@sedsconnecitve.org We'd like to wish our members, friends and all the SEDSConnective community a very Happy Easter Weekend! 🐣💛 The SEDSConnective Team |
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