World Sickle Cell Day 2019; 10 Years of Global Awareness, Advocacy & Education.

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Sickle Cell Disease (SCD) is a genetic disorder affecting 300 to 400 million adults and children worldwide. 65% of Sickle Cell Disease carriers are in Sub-Saharan Africa. Research indicates that about 90% of children born with Sickle Cell Disease in sub-Saharan Africa die before the age of 5 years.

People who have Sickle Cell Disease are born with an abnormal type of haemoglobin (S); the protein in Red Blood Cells (RBC) that carries oxygen around the body. The presence of the “S” haemoglobin and any other abnormal haemoglobin makes the diagnosis of SCD. Thus people who are SS, SC, SE etc. have Sickle Cell Disease. The presence of abnormal haemoglobin in the presence of normal haemoglobin “A” is termed Trait or Carrier. These include AS, AC etc. A person who has the sickle cell trait does not have the sickle cell disease, they generally do not have symptoms of SCD, but can pass the abnormal haemoglobin to their child and may have a child with sickle cell disease if their partner also has the sickle cell trait.

In SCD, the abnormal RBCs become sickle/crescent-shaped, hard and stiff. These get stuck in small blood vessels in different parts of the body, obstruct blood flow and deprive various parts of the body of oxygen. This blockage causes pain and injury to all organs of the body.

Sickle Cell Disease has become the foremost genetic disease worldwide. However, when diagnosed early and managed appropriately patients experience a better quality of life. Advancement in research and care also ensure that some patients are cured through Bone Marrow Transplants and Gene Therapy.

 

World Sickle Cell Day was instituted by the United Nations General Assembly in 2008 to increase the awareness about SCD and its cure among the public, and it was celebrated first time on 19th of June in 2009.

Over the past decade, World Sickle Cell Day has had different themes annually, reflecting global objectives:

 

2009: An Approach to Public Health — the Sickle Cell Burden

The burden of SCD is real. From forcing sufferers to live different lifestyles compared to their friends, to pain crises. With the year 2009, the Sickle Cell community decided to take a more public approach to the burden of sickle cell and try to inform as many people about it as possible. There’s still a lot that has to be done with informing and educating people on sickle cell disease since there are still a lot of misconceptions, such as the disease being contagious and spiritual. A lot of persons living with SCD are stigmatised for being different. A lot more has to be done with educating the public on the condition.

2010: Hope, Education and Awareness

Hope is defined as a feeling of expectation and desire for a particular thing to happen. In everything, it is essential to keep hope alive. Hope for a cure for sickle cell, hope for better training for doctors and better resources. It is also essential to educate people on Sickle Cell Disease so they’re better equipped to help out their loved ones living with the condition who may be going through difficult situations. It is also important to increase awareness of SCD. A lot more work needs to be done in the education and awareness aspects by the sickle cell community, however, we are keeping hope alive daily.

2011: Come together and Educate

The theme of sickle cell day for this year called for the whole community to come together and educate the population on Sickle Cell Disease. As with raising awareness, a lot of work is still left to do here in regards to educating the public on sickle cell disease.

2012: Keep Hope Alive

The theme called the community not to lose hope when it comes to the fight against sickle cell. It is something we as a community do daily. We keep hope alive, knowing that soon, there would be better resources for the treatment of sickle cell disease. Maybe even a more affordable and accessible cure.

2013: Know Your Sickle Cell Status

The theme for this year called everyone to know their Sickle Cell Status. The importance of this is to end the cycle of people giving birth to children with Sickle Cell Disease. It is important to know your status and then make informed decisions with your life partner. A lot of work still needs to be done in this regard especially in sub- Saharan Africa. Ghana, for example, has not seen a significant decline in the 15,000 annual births of children with SCD in the past decade.

2014: Break the Silence on Sickle Cell Disorder

In 2014, the sickle cell community was called to be more vocal about the condition, which is currently being done but has more room for improvement.

2015: For Sickle Cell Disease to stop being ignored you must STOP YOUR SILENCE and SHARE YOUR TRUTH

The theme for this year called for the sickle cell community to be more vocal about sickle cell disease again.

2016: Exhibit Courage and Address Ineffective Areas of Support

When it comes to sickle cell support, there seem to be a lot of unaddressed issues. From healthcare which isn’t

2017: Break the Sickle Cycle

With this theme, people were being called to break the cycle of sickle cell and its occurrence among us. Young couples are to be pre-tested to break the cycle of sickle cell. This goes back to the amount of education that needs to be done to help prevent  Sickle Cell.

2018: SCD: Walk For Hope

In 2018, the theme “Walk For Hope” called for the community to walk and keep the hope alive for the solution to sickle cell.

For World Sickle Cell Day 2019, after a decade of World Sickle Cell Day commemorations, we look back at Ten Years of Awareness, Advocacy and Education and continue to ask what are key success indicators, what are the lessons learnt and what has been the impact of these commemorations?

In Ghana over the past decade, there has been no concerted effort in the commemoration of World Sickle Cell Day on a national level. Unlike other conditions such as Diabetes, Malaria, HIV and Tuberculosis which have national programmes that coordinate activities related to these conditions in the country, Sickle Cell Disease continues to be left in the shadows without a national agency specifically manadated for this purpose.

Beyond symposia and lectures organised by associations and corporate organisations, medical screenings, genotype testing and health walks organised by NGOs, not much can be said for our World Sickle Cell Day efforts over the decade. Even more saddening is the lack of collaboration and integration between governmental agencies, clinicians and NGO all supposedly working for a common goal.

We can only hope that in the next decade the strengths of various stakeholders will be mobilised and all,including patients, advocates, NGOs, clinicians, researchers etc. will be invited to the table to work for the common good of the public.

No single individual, association, foundation or organisation is the citadel of all knowledge. We look forward to greater collaboration in the next decade and impact from the various activities and programmes organisised.

This year, we encourage you to join the many Sickle Cell Disease organisations in Ghana in commemorating this important Day. Join the Sickle Cell Foundation and Association on Wednesday June 19, at 5pm at the Ghana College of Physicians and Surgeons in a symposium titled “Blood is thicker than water”.
Peer Foundation on June 19th and 22nd in Takoradi for a health talk and medical screening; The Ghana Institute of Clinical Genetics (Sickle Cel Clinic), KorleBu on Saturday 22nd June at 6am for a health walk, aerobics and health education and on Sunday June 23rd join the Sickle Life support group in collaboration with SCAI, Sickle Strong Warrior Foundation and Sickle Cell Awareness Ghana at 1pm at KFC Osu for a support group meeting and fallen warriors remembrance event.

Know your genotype, make an informed decision.

 

 

 

Written by Dr. Sefakor Enam Bankas and Aaron Tabi.

(The writers are persons living with Sickle Cell Disease and Sickle Cell Disease Advocates from Sickle Life. All Views expressed are personal, please contact your doctor/counsellor for further information.)

 

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