 
                            The Mouth in Scleroderma
@InScleroderma
Research exploring the oral and dental experiences of people living with scleroderma.
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How can we achieve best practice in dental care for people with scleroderma? More awareness is critical. Read more in our first publication @vrkaggarwal @delgaldofrances @dr_liz_price @prof_liz_walker (non-paywall version) bit.ly/InSclero #scleroderma
Our first publication @InScleroderma @delgaldoFrances @Dr_liz_price @Prof_Liz_Walker highlights the urgent need to recognise and address oral health manifestations of scleroderma both by dentists and rheumatologists journals.sagepub.com/doi/10.1177/23…
Joy 66, was diagnosed with Raynaud’s 4 years ago & lives with scleroderma, psoriatic arthritis and a rare skin condition called morphoea. She is supporting our #RaynaudsEnergyCampaign as the prospect of a cold winter worries her enormously Read her story:bit.ly/3OhtfMo
 
                                            "I am not aware that the HRT has caused any negative effects at all, although I suppose you don’t know what things would have been like without it" Alison Find out more about managing the menopause with Scleroderma & Raynaud's here: bit.ly/3RjY7x9 #worldmenopauseday
 
                                            Philip has worked tirelessly and has met his fundraising target of £50,000. It's an incredible achievement, and a lovely way to remember his daughter Lauren. Watch Philip talking about why he raises money for SRUK, & join us in thanking him for raising such a monumental amount.
Delighted to be joining this very important network seeking to drive improvements across the system for people with SSc
5. A field day ERN ReCONNET Systemic #Sclerosis Group Kick-off meeting with the Disease Coordinators Vanessa Smith & Marco Matucci Cerinic and ePAGs @iaiaraia & @FarrSue01. Ninth of ten #KoM, hope and opportunity. reconnet.ern-net.eu/disease-ssc/ #ERNReCONNET. More than a Network.
 
                                                                            Find out more about this SRUK-funded study into oral and dental health in people with SSc & take part here: bit.ly/3BdMaBM
 
                                            We're helping to represent the patient voice in the DEMISTIFI project - and, in exciting news, they're holding a discovery event on 20th Sept. Want to find out more? Get your free ticket to the Demystifying Multi-Organ Scarring (Fibrosis) event here: bit.ly/3eiQc3Q
 
                                            In the UK, 1 in 6 people live with Raynaud’s & women are 4x more likely to be affected. @channel5_tv new programme, 'Women's Health: Breaking the Taboos' focuses on Raynaud's tonight at 7pm. We can't wait to tune in & hope the episode will open up the conversation about Raynaud's
In less than ten days, Dave Hughes will be taking on the 70-mile Tour de Mon challenge, where Dave will be cycling around the island of Anglesey, raising awareness and funds for LUPUS UK. Please help in saying a big THANK YOU and GOOD LUCK to Dave! 🙌justgiving.com/fundraising/Da…
Dental health is important for us all, but for people with Scleroderma it can be challenging to access the right care. So thanks to @UniversityLeeds & @UniOfHull for this piece of work to improve pathways of care
We've recently funded 'Scleroderma in the Mouth: Improving Pathways to Care' at the Universities of Leeds & Hull. They'd like to hear all about your experiences in this short questionnaire: bit.ly/3BEUqMO All responses will be anonymised and confidential.
 
                                                                            Out today - paper with Jo Bell, Marie Reid and @JudithDyson1 - our findings from an evaluation of a social prescribing service onlinelibrary.wiley.com/doi/10.1111/hs… A 🧵on findings......
 
                                            My heart felt like it was going so fast that I couldn't even feel my heartbeat. My heart rate was 217 beats per minute. My oxygen was in the low 60s. Pulmonary Hypertension patient, Kaitlyn Thompson phaware® interview 378 phawarepodcast.libsyn.com/kaitlyn-thomps…
Our cozy holiday cottage has lots of features to make you feel looked - a roll-top bath and a real fire in the inglenook fireplace. Please tell #unpaidcarers they are welcome to come and stay - for FREE. Paying guests are also welcome! #KinghamCottage #HolidayCottage
 
                                            If you're in the UK and live with scleroderma and experience problems with oral and/or dental health, please consider contributing to our @SRUK funded research. You can find out more here hull.onlinesurveys.ac.uk/the-mouth-in-s…
We've updated our #COVID19 info on vaccinations and boosters. Secondary care clinicians are being asked to notify eligible immunosuppressed patients and discuss at routine outpatient appointments. Read more in section two of our guidance bit.ly/3rwNbQ3
 
                                            We've recently funded 'Scleroderma in the Mouth: Improving Pathways to Care' at the Universities of Leeds & Hull. They'd like to hear all about your experiences in this short questionnaire: bit.ly/3BEUqMO All responses will be anonymised and confidential.
 
                                            Calling fellow GDPs and specialists. Please participate in this online survey. hull.onlinesurveys.ac.uk/the-mouth-in-s… . A @WeAreSRUK funded study to improve dental care pathways for patients with Scleroderma @InScleroderma Please circulate @wendythedentist @CGDent @TheBDA @JasonWong12
Preparing food can be challenging for people with scleroderma. Some people don’t eat simply enough because preparing and eating their food is difficult. Download our free brochure for tips on preparing food. sclerodermavictoria.com.au/wp-content/upl… #Scleroderma #SclerodermaVictoria #Awareness
 
                                            WE'RE RECRUITING! We want someone to join our staff team as Trust Fundraising Officer. This is an exciting role where you'll seek funding opportunities and cultivate relationships with a range of stakeholders.
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