I grew up to being a mother not knowing my genotype status and so unaware that i was sickle cell carrier up to the moment when my 11 months boy was diagnosed with sickle cell disease in january 2014. The myths that has been existing over sickle cell disease like it is a curse in family and that sickle cell kids dies before the age of 5 years, gave me hard and dilemma moment on accepting the fact that i will lost my son any time before that age. In a society that is less educated and less aware about sickle cell disease I DECIDED TO BE THE CHANGE All that i wanted was education, or rather knowledge about sicklecell disease. I started learning and imparting knowledge about the disease to the extent of educating other parents especially on how sickle cell disease is inherited, and how to manage/take care of a sickle cell baby. In 2015, comments like “Your son doesn’t look like he has sickle cell disease” passionately pressurized me to start thinking of the ways in which i can reach so many others, especially parents and caregivers to accept and take good care of their sickle cell children and also avoid the myths that have been built over sickle cell disease. My free time was now dedicated to help families affected direct or indirect with sickle cell disease, spending time to educate them and raising awareness on sickle cell disease to the community around me. Little steps led to big meetings, events and conferences that aimed not only at spreading awareness and education about sickle cell disease but also giving hope to families affected by such a disease. I believe when the society is educated and being full aware of sickle cell disease, the world will a better place for sickle cell patients in at least many aspect of life particularly psycho- socio aspect My vision is to see the future generation free of sickle cell disease.
She is devoted to raise awareness and education in sickle cell disease — Lydia
I’m a Patient Leader