Top Tweets for #SclerodermaChat
Thank you "Association for Scleroderma & Raynaudβs UK π¬π§" (@WeAreSRUK) for your accurate & concise recap/highlights from our conversation #SclerodermaChat (@actelion_com @LynnSteblecki & @Fscleroderma) Link π ππ» https://t.co/ecRaS2C53d
If you missed our #SclerodermaChat with @actelion_com @DrJuanOvalles @LynnSteblecki & @Fscleroderma last week, you can read a recap of some highlights from the conversation now on our blog: https://t.co/SoP35u25SL
@jamesecoker @actelion_com Independence in terms of physical mobility. Changes in appearance, limitations ( everyday chores )due to fatigue
However I have learnt to continually adapt.(1/2) #SclerodermaChat
#SclerodermaChat @actelion_com @LynnSteblecki
What 5 biggest things do you think have changed mostly in your life and how do you adapt to this ?
thank you Ms Lynn
#SclerodermaChat
Thanks to everyone!
@actelion_com
@WeAreSRUK
@Amy_Vic_Baker
@Fscleroderma
@LynnSteblecki
@PHAtoronto
@jamesecoker
@scleroderma_sso
@Hairbeautyminx
@FarrSue01
@RHEUMarampaMD
@CaringForLupus
@frk_bibo
It was great to chat with you all and to collaborate with @actelion_com @DrJuanOvalles @Fscleroderma @LynnSteblecki for an #international discussion on #scleroderma π #SclerodermaChat
Thank you for hosting a very lively #SclerodermaChat., @actelion_com
Thank you to our fellow panelists ,@WeAreSRUK , @LynnSteblecki and Dr @DrJuanOvalles https://t.co/Fv7BM9JkKE
I've learned new things today from #SclerodermaChat. Thanks for sharing your expertise and experience @DrJuanOvalles @LynnSteblecki @actelion_com Goodnight! #timezones #othersideoftheplanet
We think it's great to talk about #scleroderma. If you're wanting to talk to a friend, loved one or colleague but don't know how to explain your condition then our simple animation can help #SclerodermaChat With thanks to @Fscleroderma for supporting this project
@DrJuanOvalles @actelion_com FESCA is an umbrella group of 25 members and each association did their own campaign with #ScleroSmile, so we are still gathering data from each countries. But was shared many times on Facebook from FESCAs account. #SclerodermaChat
@RHEUMarampaMD Yes, in some cases, and for participating in clinical trials. Usually the skin disease, the blood tests and the history from the patient is enough to confirm the diagnosis. #sclerodermachat
@actelion_com Scleroderma is a great unknown disease and we have to work hard together to raise awareness about the disease. We need days, weeks and years dedicated to the disease, not just 1 day a year. The work of patient associations is invaluable for this task. #SclerodermaChat
@actelion_com Our video for #ScleroSmile can be seen here. #SclerodermaChat @actelion_com
https://t.co/gYrs1Qetn8
@jamesecoker @LynnSteblecki The most important thing is to talk openly with the couple and recognize that there is an impediment. Once recognized, it is necessary to proceed to adjust any unsatisfactory factor. #sclerodermachat
@actelion_com For #WorldSclerodermaDay we did the #ScleroSmile campaign, shared amongst our members and the rest of the world. #SclerodermaChat
@jamesecoker @LynnSteblecki It seems to me a question of immense relevance, since patients tend to be young when the disease begins. The disease greatly affects sexual performance (vascular dysfunction) and other things such as pain and anxiety decrease libido. #sclerodermachat
@DomandoAlLobo An online group can be useful too - especially for those who are unable to travel due their disease. #SclerodermaChat
#SclerodermaChat @LynnSteblecki
Thank you Lynn for your answer re circulation .Further to my question regards healthy sex life . I am going on the angle of how do we manage it as Scleroderma destroys the confidence.
@actelion_com Currently there is a pipeline very rich in potentially effective drugs for lung manifestations, with a good safety profile. Immunosuppressants, vasodilators and antifibrotic agents to manage each major pillar of the disease. #SclerodermaChat
@actelion_com Unfortunately, lung disease (hypertension or fibrosis) remains the leading cause of death in our patients. Fortunately, these manifestations are rare and treatments are getting better and safer than before #SclerodermaChat
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