Discover and read the best of Twitter Threads about #rarediseaseday2020
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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
February 29 (the rarest day) is #RareDiseaseDay and this matters a great deal. It matters to me and my family, but also to millions of others who have stories similar to ours. If you follow me on @Twitter, you probably know some of my story.
I don’t want to bore you by telling it again, but I do want to talk a bit about what I’ve learned since my #diagnosis and since becoming a #RareDisease #advocate.
The first thing I learned was that even though it was a relief to have a diagnosis...(i.e. some sort of validation that there was a reason I didn’t feel well my whole life), it was really really hard to come to terms with having this new label.
Setiap tahun terdapat banyak tarikh-tarikh penting yang diiktiraf sebagai tarikh untuk acara atau peristiwa tertentu. Namun pasti ramai yang tidak tahu adanya tarikh untuk "Hari Penyakit Jarang Berlaku" iaitu pada 29 Februari.
Pertubuhan Kesihatan Sedunia (WHO) mentakrifkan penyakit jarang jumpa atau dengan kata lain penyakit yatim piatu sebagai penyakit yang dihidapi oleh sebilangan kecil populasi am.
Manakala di Malaysia, Persatuan Penyakit Jarang Jumpa Malaysia (MRDS) telah mentakrifkan penyakit jarang jumpa sebagai penyakit yang dihidapi kurang daripada 1 dalam 4000 individu di dalam sesebuah komuniti.
