World Sickle Cell Awareness Day

World Sickle Cell Day Celebrates Patients, Raises Awareness

19th June is the world sickle cell awareness day.

On such a day, we remind ourselves the impact of this disease that dwells among many in our population especially it's effect on the health, growth and livelihood of our children.

Sickle cell disease (SCD) is genetical, it's a chronic disease with costly lifelong management.

Screen for sickle cell disease today, know your status, choose your partner wisely.

Some more facts:

SCD is a genetic blood disorders affecting millions of people worldwide.

It is a life-long and debilitating disease. It also has a substantial impact on patients’ emotional well-being and daily life affecting their ability to work and complete education. SCD financially affects the individual and their family; society and healthcare systems.

The burden of blood disorders in Europe is €23 billion per year, a level of cost that is not matched in current European haematology research funding.

Early diagnosis and regular medical care can prevent complications and contribute to improved life expectancy and quality of life, however, a recent survey revealed that many patients don’t seek care despite symptoms and complications due to previous poor experience at hospital (39%) with some reporting that healthcare providers do not understand the disease (26%).

Many patients with SCD only live into their 40s and endure unpredictable pain crises which disrupt their lives physically, socially and emotionally.

Despite the World Health Organization recognising SCD as a global problem, knowledge about SCD among healthcare providers and the public is poor.

SCD remains an invisible health issue in Europe and a few Pharma companies are dedicated to help make SCD a healthcare priority worldwide.

“SCD is a neglected chronic disease of increasing global health importance. There is a lot of work to be done to help the growing numbers of patients in Europe. It is important for healthcare professionals, policymakers, patients and the public-at-large to understand the severity of sickle cell disease and take a European-wide collaborative action on education, funding for research and awareness, and guidance and tools for screening and follow-up.

”Professor Béatrice Gulbis,

Co-coordinator of the European Reference Network EUROBLOODNET and specialist of inherited rare anaemias.”

We can stop this disease.