SclerodermaRF
@SclerodermaRF
Scleroderma Unit @royalfreenhs Tweets by long term #dcSSc patient, Nicola Whitehill, volunteer https://royalfreecharity.org/news/fundraising/nicolas-story/
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Happy #WorldSclerodermaDay #SclerodermaFreeWorld #RaynaudsFreeWorld #Research #RareDisease #Autoimmune #LifeChanging #UnknownCause #NoCure #Scleroderma #Raynauds #ConnectiveTissue #Collagen #Arthritis #InvisibleDisability #ChronicPain #DreamSnatcher #SclerodermaAwarenessMonth
Today is #WorldSclerodermaDay. Scleroderma is a rare autoimmune condition that affects the skin and connective tissue and @RoyalFreeNHS runs a special unit to help treat the condition.
blog.raynaudsscleroderma.co.uk/2018/10/raynau… 50 shades of blue 🥶 Hibernation weather ❄️ #SclerodermaFreeWorld #RaynaudsFreeWorld #Research #Scleroderma #SystemicSclerosis #Raynauds #Autoimmune #RareDisease #NoCure #UnknownCause #LifeChanging #ConnectiveTissue #BePartOfResearch #Bluefingers
blog.raynaudsscleroderma.co.uk/2017/04/the-ra… Winter is my nemesis season 😱 #SclerodermaFreeWorld #RaynaudsFreeWorld #Research #Scleroderma #SystemicSclerosis #Raynauds #Autoimmune #RareDisease #NoCure #UnknownCause #LifeChanging #ConnectiveTissue #BePartOfResearch #winter #bluefingers #hibernation
October #RaynaudsAwarenessMonth raynaudsrf.blogspot.com/2019/10/the-ra… Raynaud's Awareness: raynaudsrf.blogspot.com/2020/03/raynau… #RaynaudsFreeWorld #Research #Raynauds justgiving.com/fundraising/ra… #Vasospasm #BlueFingers #BlueToes #DigitalUlcers #Gangrene #Amputation #VascularNeuropathy #BePartOfResearch
@InvDisabilities #InvisibleDisabilitiesWeek blog.raynaudsscleroderma.co.uk/2017/10/invisi… #SclerodermaFreeWorld #RaynaudsFreeWorld #Research #Scleroderma #SystemicSclerosis #Raynauds #Autoimmune #RareDisease #NoCure #UnknownCause #LifeChanging #ConnectiveTissue #BePartOfResearch #invisibledisability
#WorldMentalHealthDay Every day I miss the old me blog.raynaudsscleroderma.co.uk/2017/04/my-job… #SclerodermaFreeWorld #RaynaudsFreeWorld #Research #Scleroderma #SystemicSclerosis #Raynauds #Autoimmune #RareDisease #NoCure #UnknownCause #LifeChanging #ConnectiveTissue #BePartOfResearch
Wowee 12 years ago! Pick me up magazine 2013 blog.raynaudsscleroderma.co.uk #SclerodermaFreeWorld #RaynaudsFreeWorld #Research #Scleroderma #SystemicSclerosis #Raynauds #Autoimmune #RareDisease #NoCure #UnknownCause #LifeChanging #ConnectiveTissue #BePartOfResearch #Flashback
October #RaynaudsAwarenessMonth raynaudsrf.blogspot.com/2019/10/the-ra… #RaynaudsFreeWorld #Research #Raynauds blog.raynaudsscleroderma.co.uk/2018/10/raynau… donate here: justgiving.com/fundraising/ra… #Vasospasm #BlueFingers #BlueToes #Pain #DigitalUlcers #Gangrene #Amputation #NoCure
#WorldHeartDay royalfreecharity.org/how-we-help/re… @NIHRtakepart #SclerodermaFreeWorld #RaynaudsFreeWorld #Research #Scleroderma #SystemicSclerosis #Raynauds #Autoimmune #RareDisease #NoCure #UnknownCause #LifeChanging #ConnectiveTissue #BePartOfResearch
Sclerodema research @RoyalFreeNHS royalfreecharity.org/how-we-help/re… Research offers HOPE @NIHRtakepart #SclerodermaFreeWorld #RaynaudsFreeWorld #Scleroderma #SystemicSclerosis #Raynauds #Autoimmune #RareDisease #NoCure #UnknownCause #LifeChanging #ConnectiveTissue #BePartOfResearch
#Flashback Initial Diagnosis 1997 blog.raynaudsscleroderma.co.uk/2017/04/sclero… @RoyalFreeChty #SclerodermaFreeWorld #RaynaudsFreeWorld #Research #Scleroderma #SystemicSclerosis #Raynauds #Autoimmune #RareDisease #NoCure #UnknownCause #LifeChanging #ConnectiveTissue #BePartOfResearch #DreamSnatcher
#GastroparesisAwareness Month #UnmetClinicalNeed #heartburn #acidreflux #bloating #malnutrition #watermelonstomach blog.raynaudsscleroderma.co.uk/2018/05/gastro… #SclerodermaFreeWorld #Research #Scleroderma #SystemicSclerosis #Raynauds #RareDisease #NoCure #UnknownCause #BePartOfResearch #GERD
Wowee 9 years ago! #SKIN Involvement blog.raynaudsscleroderma.co.uk/2017/04/skin-i… #SclerodermaFreeWorld #RaynaudsFreeWorld #Research #Scleroderma #SystemicSclerosis #Raynauds #Autoimmune #RareDisease #NoCure #UnknownCause #LifeChanging #ConnectiveTissue #TightSkin #BePartOfResearch #DermatologyCare
sclerodermarf.blogspot.com/2019/08/gastro… #GastroparesisAwarenessMonth #UnmetClinicalNeed #heartburn #acidreflux #bloating #malnutrition #watermelonstomach #SclerodermaFreeWorld #RaynaudsFreeWorld #Scleroderma #SystemicSclerosis #Raynauds #Autoimmune #RareDisease #NoCure #BePartOfResearch
FDA Approves 1st new Fibromyalgia drug in 15 yrs - Tonmya (cyclobenzaprine HCl sublingual) as treatment of fibromyalgia in adults. Based on 2 phase 3 trials and 1400+ pts. Dose 2.8 mg tabs 1-2 SL qhs (peak concentration 4.3 hours; t1/2 life = 36 hrs, longer w/ elderly, liver dz)…
dailymail.co.uk/health/article… 12 years since I came out of the scleroderma awareness closet 😱 Grateful to still be here, still no cure 😭 royalfreecharity.org/stories/volunt… #SclerodermaFreeWorld #RaynaudsFreeWorld #BePartOfResearch #scleroderma #systemicsclerosis #LifeChanging #RareDisease
Nailfold videocapillaroscopy (NVC) in Dx of systemic sclerosis - study of 258 NVCs found giant capillaries (specificity 98%) & capillary density to be best at defining a scleroderma pattern (39%). Density ≤8 capillaries/mm best defined dropout (AUC 0.911); having both = 91%…
#GastroparesisAwareness #heartburn #acidreflux #bloating #malnutrition blog.raynaudsscleroderma.co.uk/2018/05/gastro… #SclerodermaFreeWorld #RaynaudsFreeWorld #Research #Scleroderma #SystemicSclerosis #Raynauds #Autoimmune #RareDisease #NoCure #LifeChanging #ConnectiveTissue #BePartOfResearch #GERD
#GastroparesisAwarenessMonth sclerodermarf.blogspot.com/2019/08/gastro… #GERD #AcidReflux #Bloating #Malnutrition #Heartburn #SclerodermaFreeWorld #SystemicSclerosis #BePartOfResearch #NoCure #scleroderma #Raynauds #RareDisease #Autoimmune
Study of 74 systemic sclerosis pts shows nailfold videocapillaroscopy (capillary disorganization, late pattern changes) predicts ILD progression, worsening PFTs & mRSS in SSc over 2 yrs. KL-6 correlates w/ NVC findings & PFT decline. ILD incr from 38 to 51% in 2yrs…
Happy 77th Birthday @NHSEngland 🥳 Thank You for keeping me alive 💖 #flashback blog.raynaudsscleroderma.co.uk/2018/09/happy-… #SclerodermaFreeWorld #RaynaudsFreeWorld #Research #Scleroderma #SystemicSclerosis #Raynauds #Autoimmune #RareDisease #NoCure #UnknownCause #LifeChanging #BePartOfResearch
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