A health advocacy group on a rare yet increasingly prevalent disease has just welcomed its newest ally, Maria Vamvakinou MP.

The Greek parliamentarian is joining the Australian Sickle Cell Advocacy Inc (ASCA) as an ambassador to help raise greater awareness of this medical disorder and advocate for consistent guidelines in treatment to the objective of improving the lives of those affected.

“My involvement with this organisation came as a result of [the organisation’s founder] Agnes [Nsofwa] – who is my constituent – after she approached me as part of her awareness raising campaign,” Ms Vamvakinou explains.

“Agnes spoke passionately about her daughter Mapalo Joy, and the pain and suffering she has had to endure as a result of sickle cell disease.”

READ MORE: MP Vamvakinou launches Australian Sickle Cell Advocacy

An inherited form of anemia, sickle cell disease (SCD) affects how oxygen is carried throughout the body. The condition can distort red blood cells into a sickle, or crescent, shape. As a result, sickle cells die early, which causes a constant shortage of red blood cells. Furthermore, the irregularly shaped cells can get stuck in small blood vessels, slowing or blocking blood flow and oxygen and thus causing severe pain and other problems ranging from infection to stroke.

Peter Leos, who acts as Support Networks Coordinator for ASCA knows about the sickle cell disease first-hand being a patient himself.

On the rarity of the disease occurrence in Australia, Mr Leos says:

“The incidences are not well described due to the lack of conclusive data to capture the number of people affected by this disease. SCD and other similar disorders (eg, Thalassaemia) are likely to increase as Australia is already an ethnically diverse country, and with increasing migration […] Many people of Greek descent suffer from this condition, including myself.”

READ MORE: Greek Cypriot doctor succumbs to Thalassaemia after life spent building awareness

In a media release issued on the occasion of Vamvakinou MP officially joining forces with the organisation, it is stressed that the Greek parliamentarian is not new to supporting ASCA’s mission.

“She was the keynote speaker at our official launch in June 2019; where she spoke about our work.

“Hon Vamvakinou also spoke about our work in the Federal Parliament, highlighting the increasing prevalence of SCD in Australia. Having advocated for ASCA as our informal ambassador, it felt natural that we approach her to be our official ambassador.”