Discover and read the best of Twitter Threads about #systemicsclerosis
Most recents (3)
“I turned in my man card”
November is men’s health awareness month so what better time to share the key findings from my recent paper. Available here open access: academic.oup.com/rheumatology/a…
November is men’s health awareness month so what better time to share the key findings from my recent paper. Available here open access: academic.oup.com/rheumatology/a…
Men with #scleroderma / #systemicsclerosis (SSc) have lower survival rates than women (~2:1) but no studies had previously explored men’s experiences and support needs. So I conducted focus groups with men with SSc in UK and USA
Many of the participants discussed their mortality often using dark humour to make it easier to talk about (“I’ve stopped buying green bananas”) They worried about how their families would cope and made plans for a future they didn’t expect to be part of (often financially). 
Hey #MedTwitter fam!
Time for the inaugural #MedDermTwagTeam #tweetorial on #Scleroderma
This is a diffuse (get it?) topic so @RashDecisionz & I will try to keep it focused
I’ll tweet on illness script
S/O to @CPSolvers @MedEdTwagTeam and many others for the inspiration!
1/12
Time for the inaugural #MedDermTwagTeam #tweetorial on #Scleroderma
This is a diffuse (get it?) topic so @RashDecisionz & I will try to keep it focused
I’ll tweet on illness script
S/O to @CPSolvers @MedEdTwagTeam and many others for the inspiration!
1/12
Who else gets confused with the terminology? I sure do
The confusion may arise because scleroderma is a spectrum of disorders. Also, people say Scleroderma interchangeably with #SystemicSclerosis
The subtype is based on extent of skin & organ involvement
2/12
The confusion may arise because scleroderma is a spectrum of disorders. Also, people say Scleroderma interchangeably with #SystemicSclerosis
The subtype is based on extent of skin & organ involvement
2/12
Let’s focus on Systemic Sclerosis (SSc)
SSc is a multi-organ, progressive vasculopathy and fibrosing condition with skin being main target
Earliest sign is Raynaud phenomenon, occurs in 95% of pts
Skin thickening w/o Raynauds makes SSc unlikely
nature.com/articles/s4158…
3/12
SSc is a multi-organ, progressive vasculopathy and fibrosing condition with skin being main target
Earliest sign is Raynaud phenomenon, occurs in 95% of pts
Skin thickening w/o Raynauds makes SSc unlikely
nature.com/articles/s4158…
3/12
February 29th is the #RareDiseaseDay! A special day for 13 million Brazilians with rare diseases like #idiopathic #pulmonaryfibrosis #ipf #cpfe, #systemicsclerosis #SSc #SScILD #ymphangioleiomyomatosis #lam
and so many others!
and so many others!
A day to remember that the disease can be #rare, but NOT the #diagnosis ! After all, the #rare just wants #support, #care & be #welcome like all of us!
But they need all of us to be listened and respected in other to continue moving forward with #hope & making the world a better place for all ! " :) #rarediseaseday2020
