ASVI 2022 Webinar One

ASVI Webinar Series Part Three session one kicked off on Saturday 5th February at 7am EST. The event started of with the Chairperson Zakareya emphasising on ASVI’s reason for creating this organisation. Core objectives were discussed which are, Awareness, being Responsive and bringing Hope to the Sickle Cell Community.

Our main goals involve us advocating for healthy life and success for people with Sickle Cell Disease (SCD). We are also raising awareness about the risks and challenges faced by people with the Sickle Cell Trait (SCT).

Desiree, a Sickle Cell Warrior from Belize gave her testimony living with SCD. A mother of two, bad experiences with overall management of SCD. Hydroxyurea failed her, was poisoning her blood and needed chemotherapy. Different complications, oxygen dependent etc.

Dr Hana Aljulaih presented on an overview of SCD in the Kingdom of Saudi Arabia (KSA). SCD was first reported in Eastern KSA in the 1960s. Prevalence varies in different provinces with 145 per 10,000 in the eastern region, 24 per 10,000 in the southern region, 12 cases per 10,000 in the western region and 6 per 10,000 in the central region.

KSA focuses on prevention programs via Newborn Screening and holding national telehealth programs. The future for SCD in KSA, sees the introduction of Haematology clinics, health education and counselling, virtual clinics, education activities in publics schools and virtual setting, having multidisciplinary clinics, pain control programs, transition clinic, SCD passport and more.

Dr Thuraya presented on Sickle Cell Disease in Oman. Similar issues like KSA touched on importance of mental health support. Highlighted psychological issues faced by Sickle Cell Warriors & how they are perceived by society. We need to change the narratives. 

Dr Mohammed ALshahrani presented on importance of Sickle Cell Trait Education and prevalence of SCT globally. Complications associated with SCT was extensively discussed as well. The presentation was both English and Arabic.

Dr Rob Sokolic presented on Health and Research Disparities in Sickle Cell Disease. In comparison to other conditions like Cystic Fibrosis affecting mostly Caucasians & far less people compared to SCD which affects millions globally, SCD is under funded, less researched. Coupled with racism. 

Caregiver experience by Rockel from Belize was next followed by Gloria. Ashu contributed on an overview of SCD in Cameroon. 

Monica a patient advocate presented on the importance of self advocacy. Diagnosed at the age of 37 with Sickle Cell Disease, Monica has dedicated her life to raising awareness and educating people on self advocacy. 

Dr Patrick McGann the Director at Lifespan SCD Program joined in sharing his experience working in African countries like Angola. Dr McGann emphasised on awareness, Amplifying SCD Voices, Newborn Screening & discussed the use of Hydroxyurea.

Join ASVI next Saturday as we commence on Heart Health Awareness in Sickle Cell Disease. See the link to register here

See the contributors to this topic here.

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