Jessica Reisman · @jesswynne
122 followers · 60 posts · Server wandering.shop
This is… not much of a poem. But it’s what I’ve got and where I'm at. #poems #chronicilness #scleroderma
#poems #chronicilness #scleroderma
Jessica Reisman · @jesswynne
120 followers · 49 posts · Server wandering.shopScleroderma sucks; a hand report. https://storyrainthejournal.dreamwidth.org/603121.htm
#scleroderma
Jessica Reisman · @jesswynne
120 followers · 49 posts · Server wandering.shop
The bodily trials continue here;have had to drug myself into a near stupor to keep from tearing the skin off all my fingers. But still and yet, cats. #scleroderma #progressreport #catsofmastodon
#scleroderma #progressreport #catsofmastodon
Jessica Reisman · @jesswynne
118 followers · 45 posts · Server wandering.shop
Things are a little challenging here. Between scleroderma and covid...well. I am tired. Here’s a cat. At least there’s cats. #scleroderma #catsofmastodon
SoybeanJenny · @SoybeanJenny
63 followers · 176 posts · Server mstdn.socialUgh..! That’ll teach me to think I can stop putting k-tape on my oxygen’s #NasalCannula that I’ve been using to prevent cheek blisters caused by pressure sores 😢
I can’t believe how much my cheeks hurt right now, as well as how itchy & swollen everything is on top of it 🥺
So much owieness… everything touching my face hurts, even my glasses 😣
I wish there was a #BetterSolution for #SupplementalOxygen users 😓
#Scleroderma
#InterstitialLungDisease #PulmonaryArterialHypertension
#pulmonaryarterialhypertension #interstitiallungdisease #scleroderma #supplementaloxygen #bettersolution #nasalcannula
Elisabeth Kugler · @KuglerElisabeth
183 followers · 105 posts · Server mstdn.scienceAfter 3 years of struggles with #rareDisease we got some good news today.✨️
It's my birthday next week. At some point I thought I wouldn't see that day...
Chronic illness is hard.
Rare disease is hard.
.@NHSEngland #scleroderma #dermatomyositis #rareIsMany
#raredisease #scleroderma #Dermatomyositis #rareismany
Elisabeth Kugler · @KuglerElisabeth
182 followers · 102 posts · Server mstdn.science
So excited to see my #art submission "Autoimmunity" not only in but ALSO on the cover .@ConsilienceJrnl.
It explores my struggle as a scientist and patient. Focussing on #scleroderma which primarily affects hands.
.@sruk
https://www.consilience-journal.com/conciliarte/autoimmunity
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RT @ConsilienceJrnl
Issue 12 of the journal is now live! Wahoo! Check it out for poetry and artwork that explores the scientific idea of 'Struggle…
https://twitter.com/ConsilienceJrnl/status/1640266108249726977
Elisabeth Kugler · @KuglerElisabeth
182 followers · 102 posts · Server mstdn.scienceIt's #autoimmuneAwarenessMonth
As scientist, I am fascinated.
As patient, I am terrified.
Incredibly lucky to have an excellent care team .@LeedsHospitals!
#scleroderma #dermatomyositis #raynauds @NHSEngland
#autoimmuneawarenessmonth #scleroderma #Dermatomyositis #raynauds
Chandani DeZure, MD · @CDeZureMD
112 followers · 107 posts · Server med-mastodon.com
DID YOU KNOW?
🔹️25 million people suffer from PH in 🌎?
🔹️3 in 4 pts have advanced dz by the time of dx
🔹️cost of therapies $100k/yr
#phaware #RareDiseaseDay #ShowYourStripes #ShareYourColours
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RT @PHAssociation
More than 25 million people in the U.S. and 300 million people worldwide are impacted by a rare disease. #Pulmonaryhypertension is often associated with other #rarediseases such as #scleroderma, #HHT, idiopathic #pulmonary…
https://twitter.com/PHAssociation/status/1630572366739718146
#phaware #rarediseaseday #showyourstripes #shareyourcolours #PulmonaryHypertension #rarediseases #scleroderma #hht #pulmonary
Elisabeth Kugler · @KuglerElisabeth
182 followers · 102 posts · Server mstdn.science
Rare is Many.
There are over 300 Million (!) people living with a rare disease.
@sruk @rarediseaseday
#rareDisease #scleroderma #Dermatomyositis #health #equity
#raredisease #scleroderma #Dermatomyositis #health #equity
Elisabeth Kugler · @KuglerElisabeth
182 followers · 102 posts · Server mstdn.science
28 FEBRUARY is Rare Disease Day.
Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers.
#rareDisease #scleroderma #Dermatomyositis #Raynauds #noCure
@rarediseaseday @sruk
#raredisease #scleroderma #Dermatomyositis #raynauds #nocure
Elisabeth Kugler · @KuglerElisabeth
182 followers · 102 posts · Server mstdn.science
There is no cure for #scleroderma and a lot of research still needs to be done.
I am grateful for the fantastic .@LeedsHospitals research team and .@NHSEngland 💙
#RareDisease .@rarediseaseuk .@rarediseaseday
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RT @cosmicfairy444
A poignant reminder how blessed I am heading for 50, diagnosed 1997, 15 month prognosis; half of my life hijacked #Hope #SclerodermaFreeWorld 🙏 Eternally grateful to Prof Denton world #scleroderma expert…
https://twitter.com/cosmicfairy444/status/1624775298788081664
#scleroderma #raredisease #hope #sclerodermafreeworld
Elisabeth Kugler · @KuglerElisabeth
182 followers · 102 posts · Server mstdn.science
February is #raynaudsawarenessmonth.
Raynauds is a disease affecting blood vessels, leading to colour change, pain, & numbness.
It is triggered by cold temperatures, anxiety or stress, but is also very common secondary to #Scleroderma.
.@sruk #raredisease
Photo:wikipedia
#raynaudsawarenessmonth #scleroderma #raredisease
Yann Nguyen · @ynguyen
11 followers · 22 posts · Server med-mastodon.com
RT @gurdeep_dulay@twitter.com
Predictive features for #SystemicSclerosis
➡️#Raynauds with abnormal nailfold capillaroscopy and #Ssc antibodies = 66% transition to #Scleroderma in 5 years
https://doi.org/10.1016/S0140-6736(22)01692-0
🐦🔗: https://twitter.com/gurdeep_dulay/status/1599316753921630208
#systemicsclerosis #raynauds #SSC #scleroderma
Digit · @digit
2 followers · 15 posts · Server disabled.sociallets see if these fit in a mastodon post (this long intro wont help, oops)
#Asthma #Eczema #Migraines #Raynauds #Scleroderma #IBS #Arthritis #Fibromyalgia #Hayfever
#ShearedVeins #DetatchedMuscle #TwistedSpine #BackPain #dislocatedshoulder #LackOfPelvisControl #MisalignedPelvis #TighteningTendon
#anxiety #socialanxiety #depression #ptsd #cptsd #spd #pda #hypervigilance #agoraphobia #severephoneanxiety #stultophobia #seasonalaffectivedisorder
cool, that much fits. makes me feel beter. :)
#asthma #eczema #migraines #Raynauds #scleroderma #ibs #arthritis #fibromyalgia #hayfever #shearedveins #detatchedmuscle #twistedspine #backpain #dislocatedshoulder #lackofpelviscontrol #misalignedpelvis #tighteningtendon #anxiety #socialanxiety #depression #ptsd #cptsd #SPD #pda #hypervigilance #agoraphobia #severephoneanxiety #stultophobia #seasonalaffectivedisorder
Travis 🌷🏴 · @ramblinghobbit
111 followers · 150 posts · Server sfba.social
For #FungiFriday have a looksie at the time a few weeks ago when I found a bunch of Onion Earthball (#Scleroderma cepa) #mushrooms! Here's one I was documenting for #iNaturalist that *spontaneously* exploded ashy black spores all over my arm and chest (not in the face, thankfully😅).
Link to observation: https://www.inaturalist.org/observations/141276167
#science #iNat #NaturalistsOfMastodon #Naturalists #puffballs #boom #poof #ParticipatoryScience #California #Monterey #spores #FieldWork #volunteering #FollowFriday
#FungiFriday #scleroderma #mushrooms #inaturalist #science #iNat #NaturalistsOfMastodon #naturalists #puffballs #boom #poof #ParticipatoryScience #california #monterey #Spores #fieldwork #volunteering #followfriday
Travis 🌷🏴 · @ramblinghobbit
105 followers · 146 posts · Server sfba.socialFor #FungiFriday have a looksie at the time a few weeks ago when I found a bunch of Onion Earthball (#Scleroderma cepa) #mushrooms! Here's one I was documenting for #iNaturalist that *spontaneously* exploded ashy black spores all over my arm and chest (not in the face, thankfully😅).
Link to observation: https://www.inaturalist.org/observations/141276167
#science #iNat #NaturalistsOfMastodon #Naturalists #puffballs #boom #poof #ParticipatoryScience #California #Monterey #spores #FieldWork #volunteering
#FungiFriday #scleroderma #mushrooms #inaturalist #science #iNat #NaturalistsOfMastodon #naturalists #puffballs #boom #poof #ParticipatoryScience #california #monterey #Spores #fieldwork #volunteering
Atlantisblauw · @atlantisblauw
304 followers · 533 posts · Server mstdn.socialPosting this so people with similar interests can find me:
#literature #books #vegan #achalasia #scleroderma #SystemicSclerosis #France #french #SGA #Stargate #scifi #ComputerHistory #History of #ComputerScience, #Aviation & #Medicine #NaturalHistory
#NaturalDisaster #FrenchHistory #Lapérouse #colonialism #Hispaniola #slavery #enlightenment #WWII #Holocaust #Todoist #bujo #bulletjournal #journaling #arthistory #surrealism #cubism #ForgottenVegetables #drawing #Chumbawamba
#chumbawamba #Drawing #forgottenvegetables #cubism #surrealism #arthistory #journaling #bulletjournal #bujo #todoist #holocaust #wwii #enlightenment #slavery #Hispaniola #colonialism #laperouse #Frenchhistory #naturaldisaster #naturalhistory #medicine #Aviation #computerscience #History #computerhistory #SciFi #stargate #sga #french #France #systemicsclerosis #scleroderma #achalasia #Vegan #Books #literature
James Carver · @JamesJimCarver
1 followers · 507 posts · Server respublicae.eu
A fantastic organisation. I was delighted and privileged to host an exhibition of theirs in the European Parliament, back in the day. They work they so hard raising awareness of #Scleroderma.
RT @Scleroframed: Today, we have put up our exhibition on the green wall @Zuyderland hospital. There were many visitors all day who were interested in our expo ‘Scleroderma Framed’. Also want to meet us? We are there again on Wednesday and …
🐦🔗: https://nitter.eu/JamesJimCarver/status/1579552611312996354
Patrizia Toia · @toiapatrizia
2 followers · 46 posts · Server respublicae.eu
I look forward to being part of
@Fscleroderma event on September 27. I urge you to register today, to secure your attendance. https://bit.ly/3QGlTS9
RT @Fscleroderma: We are excited to have @toiapatrizia host our “Advancing equitable rare disease diagnosis and care: How EU health policy can solve existing challenges” event next month.
#scleroderma #BloomWithScleroderma https://fesca-scleroderma.eu/wsd2022/?utm_source=twitter&ut…
🐦🔗: https://nitter.eu/toiapatrizia/status/1571790517028913152
#scleroderma #BloomWithScleroderma