The Mouth in Scleroderma @InScleroderma
Research exploring the oral and dental experiences of people living with scleroderma. Joined July 2022-
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Following47
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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
Delighted to be joining this very important network seeking to drive improvements across the system for people with SSc
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
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
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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RAIRDA @RAIRDA_org
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Caroline White @carolinannwhite
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Vishal aggarwal @vrkaggarwal
330 Followers 431 Following Associate Professor @leedsdentistry. Clinical Epidemiologist / dentist. Multimorbidity related to oral health. Orofacial pain / TMD self-management. Own views.
Liz Walker @Prof_Liz_Walker
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Alice Grosjean @sjogrenCHalice
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274 Followers 399 Following
scleroderma/cancer wa... @liz_rogers74
161 Followers 584 Following fighting scleroderma since 2015 and stage2 breast cancer 2021...loves to be by the sea ..and guinea🐹 pigs
Elisabeth Kugler @KuglerElisabeth
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Sue Farrington @FarrSue01
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Christina Worle @ChristinaWorle
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Jill Manthorpe @JillManthorpe
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SPARC @SPARChull
214 Followers 180 Following University of Hull research group exploring Social and Psychological Research into Long-term Health Conditions (SPARC)
phaware® @phaware
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Caroline White @carolinannwhite
616 Followers 652 Following @uniofhull researcher - also @dist_care. Interests: adult soc care inc safeguarding. Reader & book buyer. Own Tweets - don't necessarily reflect views of UoH
Ana Vieira @SjogrenpowerAna
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Ben Atkins @Ben_Atkins
1K Followers 612 Following Dr Atkins is a dentist with a difference, an oral health ambassador and a media dental expert. Ben says the key to great dentistry is communication & listening.
Vishal aggarwal @vrkaggarwal
330 Followers 431 Following Associate Professor @leedsdentistry. Clinical Epidemiologist / dentist. Multimorbidity related to oral health. Orofacial pain / TMD self-management. Own views.
Scleroderma News @SclerodermaNews
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American College of R... @ACRheum
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nicola whitehill @cosmicfairy444
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Scleroderma Canada @SclerodermaCAN
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Lupus UK @LUPUSUK
10K Followers 649 Following The national charity for #lupus. We are no longer active on X. Please follow our other platforms or visit https://t.co/r24d3EHXnS for more information.
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World Scleroderma Fou... @Worldsclerofnd
2K Followers 327 Following The World Scleroderma Foundation is a non-profit, non-governmental foundation based in Switzerland, promoting scleroderma research and supporting patients.
World Young Rheumatic... @WORDDay_org
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JSRD @JScleroderma
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