ASVI Webinar Series Part Three session three was held on Saturday 19th 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).
The session started off with a patient testimony from Deborah a Zambian Sickle Cell Warrior. Deborah shared her experience with cardiovascular complications. Deborah indicated that being a sickle cell warrior in developing countries like Zambia, most hospitals do not have the capacity to help warriors. She further added that in order to get treatment, one has to push and fight for it, and sometimes most warriors and caregivers do not have the energy to do that.
|Dr Jaffer Al Tooq from Bahrain presented on Pulmonary Hypertension in sickle Cell Warriors, how it comes about, its symptoms and treatment. He also explained on how early intake of Hydroxyurea can help lower chances of developing sickle cell complications and prolong warrior’s life.|
Laura a Medical from Kenya also Shared her knowledge on Pulmonary Hypertension in Sickle Cell Disease, it’s causes, signs and treatment.
Dr Sokolic shared his insights on Pulmonary Hypertension and Organ damage. He stressed on the importance of screening of Organ, routine checks-ups and the intake of hydroxyurea to minimize sickle cell complications.
Abram Phiri, a Clinical Officer Student from Zambia also shared his presented on Hypertension and systemic Hypertension in warriors.
Mwape a Sickle Cell Trait Warrior from the UK shared her current struggles with Hypertension, low oxygen levels and pain.
Dr Adriana Bello joined in and shared her insights on Sickle cell Trait and her experience as a pediatric Haematologist.
She emphasized that early treatment in warriors can help prevent complications as they grow up which help improve the life expectancy of adult warriors.
Teresa Ginger Davis a sickle cell warrior and Advocate shared a breakdown of Pulmonary Hypertension in simpler terms to help warriors understand it more.
She also encouraged warriors on the importance of self advocate especially when it comes to getting treatment.
Peter a sickle cell warrior and Advocate from Nigeria shared his views on reasons why most warriors who develop Pulmonary Hypertension get their diagnosis late and reason being that most warriors in Nigeria don’t have to the right doctors and health care facilities.
The session was closed with remarks on Amplify Sickle Cell Voices International Inc and how one can get to be part of the movement in changing Sickle Cell narratives. Join ASVI next Saturday 5th March 2022 discussing the importance of Nutrition in Sickle Cell Disease.
Join the webinar serries every Saturday 7am EST as we continue amplify SCD voices. See the link to register here
Phone: +61 414 309 995