SclerodermaRF
@SclerodermaRF
Scleroderma Unit @royalfreenhs Tweets by long term #dcSSc patient, Nicola Whitehill, volunteer https://royalfreecharity.org/news/fundraising/nicolas-story/
قد يعجبك
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/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
dailymail.co.uk
'I'm the real-life Tin Man': Woman, 40, must bathe in oil and moisturise for three HOURS every day...
Nicola Whitehill, 40, of Southport, Merseyside, has systemic sclerosis (scleroderma), meaning her skin and blood vessels harden and restrict her movement.
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
                                            #SclerodermaAwarenessMonth #Research offers #HOPE @NIHRresearch @NIHRtakepart rdn.nihr.ac.uk/news/rare-dise… #SclerodermaFreeWorld #RaynaudsFreeWorld #Research #Scleroderma #SystemicSclerosis #Raynauds #Autoimmune #RareDisease #NoCure #UnknownCause #ConnectiveTissue #BePartOfResearch
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قد يعجبك
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                                                        World Scleroderma Foundation
@Worldsclerofnd - 
                                                
                                                    
                                                        Dr. Dinesh Khanna
@sclerodermaUM - 
                                                
                                                    
                                                        Raynaud's Assn.
@raynaudsorg - 
                                                
                                                    
                                                        EUSTAR
@EUSTAR_org - 
                                                
                                                    
                                                        Scleroderma News
@SclerodermaNews - 
                                                
                                                    
                                                        SRUK | Scleroderma & Raynaud's UK
@WeAreSRUK - 
                                                
                                                    
                                                        JCR: Journal of Clinical Rheumatology
@JRheumatology - 
                                                
                                                    
                                                        SclerodermaSalfordManchester
@SclerodermaM - 
                                                
                                                    
                                                        Peter Korsten
@pekor002 - 
                                                
                                                    
                                                        Scleroderma Victoria
@scleroderma_vic - 
                                                
                                                    
                                                        The Journal of Rheumatology
@jrheum - 
                                                
                                                    
                                                        EULAR
@eular_org - 
                                                
                                                    
                                                        nicola whitehill
@cosmicfairy444 
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