Over the years,
One thing that sickle cell disorder missed is being able to extract qualitative data about it from sickle cell warriors.
There is this problem of sickle cell warriors not speaking out about sickle cell disorder in the way they feel and experience it, probably because of cultural and religious restrictions to say positive even in the midst of the negativity experienced.
For science, saying it the way you feel it is what helps better discoveries that facilitate inventing better care.
Sickle cell disorder outdated so many diseases that have attracted better care and intervention in managing them and the reason is that people with these other diseases like TB, HIV, cancer, organ diseases/failures have spoken out to explain how they feel and experience the disease.
This is one area that sickle cell disorder has missed over the years,
So it is important that sickle cell warriors speak out about sickle cell disorder in the way they feel and experience it,
Not the way people around and away from them want them to speak about it.
Our voice is our power to create proper awareness about SCD
Our voice is our power to attract proper attention and care for SCD.
Get your copy of this book:
A LIFE WITH SICKLE CELL ANAEMIA.
Ladiflexxa
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