By Melanius Alphonse
June 19, 2012, was the fourth World Sickle Cell Day. This was made possible by a United Nations resolution in 2008, to increase awareness of the genetic disease called sickle cell anemia (SCA), to promote awareness because “Sickle Cell is a Global Health Problem!”
Melanius Alphonse is a management and development consultant. He is an advocate for community development, social justice, economic freedom and equality; the Lucian People’s Movement (LPM) critic on youth initiative, infrastructure, economic and business development. He can be reached at firstname.lastname@example.org
SCA is one of the world’s foremost genetic diseases that has severe physical, psychological and social consequences for those affected and their families -- and in its homozygote form it is one of the most lethal genetic diseases that quietly affect millions globally.
In celebration of World Sickle Cell Day, Sickle Cell Miracle Network (SCMN) and the Jules Foundation (TJF) were part of a full spectrum of community-based organizations in Toronto, Canada, participating in awareness events that highlighted patients’ accomplishments; and learning through professional presentations and patient care experiences at the Taibu Community health center in Scarborough and Toronto General Hospital.
These events brought physicians, pharmaceutical suppliers, government representatives, parents and the sickle cell community to move forward with the primary task of patient care and service delivery -- that will enable individuals with SCA the best opportunity to live a full life despite the odds.
Regrettably, it has been over one hundred years since the first known case of sickle cell disease (SCD) was published in medical literature. Today, there is still no cure!
Sickle cell disease is an international and global health challenge. SCD is an inherited blood condition that occurs due to the formation of defective hemoglobin -- a protein responsible for transporting oxygen in red blood cells (RBC).This defect affects the normal functioning of RBCs causing excruciating pain, stroke, organ damage and other life-threatening complications.
The disrupted DNA sequence that is used to make this hemoglobin can be transferred from one generation to another, resulting in a large population with sickle cell disease or trait.
President of SCMN and TJF, Naomi Jules, has repeatedly called for the need to establish a comprehensive approach to manage the disease via a sickle cell research centre that forms part of a cohesive and inclusive approach to health care research and training -- and a national sickle cell electronic database for people suffering from sickle cell and other ‘‘haemoglobinopathy” disorders.
In keeping with World Sickle Day celebrations, SCMN and TJF staged a Prosperity Ball on June 24, 2012. This celebration highlighted the advancement and lives of children and youth living with debilitating and life-threatening illness such as sickle cell anemia.
Speakers included Pauline Christian, president of the Black Business and Professional Association (BBPA); Sandra Netwon, a doctoral candidate in child and adolescent clinical psychology at the Ontario Institute for Studies in Education, the University of Toronto (OISE/UT; Delerous Lawrence, president and founder Nursing & Homemakers Inc (NHI) and Dr Chaya Kulkarin, director, Infant Mental Health Promotion (IMHP), Sick Kids Hospital in Toronto.
In attendance were medical practitioners, insurance and legal professionals, community support personals, the police service, pioneers of sickle cell legislation such as Dr Kristy Duncan MP, Etobicoke North; representatives from the consular corps of St Vincent and the Grenadines, Trinidad and Tobago, Cuba and Saint Lucia. Newly appointed Consul General Mr Michael Willius represented Saint Lucia.
Building community starts with a healthy foundation, group participation and committed people. And this holds true to the wise words of Mahatma Gandhi: “The future depends on what we do in the present.”
Organizations such as the Sickle Cell Miracle Network (SCMN) and the Jules Foundation (TJF) exemplify that foundation and the right resource base to help build a better community for our future.
One of the major issues for children who live with any major illness is their inability to keep up with their education. In so doing, TJF, through a scholarship fund, has issued scholarships and grants to eight students.
Likewise, SCMN issued nine community service awards of excellence, three humanitarian, and eleven awards of merit in leadership.
The trailblazer award was presented to Hon. Jean Augustine; lifetime achievement was awarded to Senator Anne Cools and Howard McCurdy. The award of Merit for Pharmacology was presented to Winston Clarke, while the Media award went to Jon Sarpon. Allison Petgrave received the Parent of the Year award. All recipients were present to receive their award at the prosperity ball.
In the words of founder and president of SCMN and TJF, Naomi Jules, “Sickle Cell is not just a term to be thrown around and use casually; there are real people, real families and real struggles behind each story. Our work can only be enhanced through partnership with others who share the same precious dreams that we hold for those directly affected by sickle cell disease.”
SCMN, and TJF took the opportunity to extend their continual support to the president of the Caribbean Sickle Cell Association and president of the Saint Lucia Sickle Cell Association, Paula Calderon, in their struggle to have universal health care, access to insurance and increase funding to ensure the much needed treatment and support services for those who suffer with SCA and other life threatening disorders.
The US, with the Obama Health Care Plan, is doing what is morally correct and socially responsible; hopefully the Caribbean region legislative representatives, legal authorities and insurance companies will have the courage to do the same.
An opportune moment is available to make this commitment at the Caribbean Sickle Cell conference schedule for October 2012, in Saint Lucia.