SIERRA LEONE SICKLE CELL SOCIETY COMMEMORATESTHE 13^TH WORLD SICKLE CELL DAY ON 19^th JUNE 2021 BY AMELIA EVA GABBA. PROGRAMME COORDINATOR

INTRODUCTION

Sierra Leone Sickle Cell Society,on Saturday June 19th 2021, once again join the rest of the world in commemorating World Sickle Cell Day.Each year we gather together on June 19^th to raise awareness of Sickle Cell Disorder (SCD) and even in the midst of the COVID-19 pandemic we will continue to scale up on these activities and fight for awareness for the Sickle Cell condition in our country Sierra Leone. Please join us to support and raise awareness of SCD to benefit all those affected by the condition. The Sierra Leone Sickle Society has been involved in clinical consultative services, genetic counseling, maintenance treatment and crisis management of persons with SCD and the care of sickle cell patients and their families since 1992. TheSociety also serves an advocacy function,also specialized in creating awareness through Social Mobilization activities, and undertakes public education in schools and to the public at large through the medium of radio and TV broadcasts, newspaper articles and public meetings. The Society is supporting the provision of specialized care and management for SCD patients through two main teaching hospitals, the Connaught Teaching hospital and the Ola During Children’s hospital in Freetown. There is limited care in the regions, particularly in government services. That is the main reason why we should continue to scale up on sensitization for recognition and support for the thousands out there in the Districts.

Theme: “LIFT EVERY VOICE TO SHINE THE LIGHT ON SICKLE CELL DISEASE”

WORLD SICKLE CELL DAY

Saturday June 19th June was World Sickle Cell Day and this year the World is commemorating the 13^th year of the celebration amidst the Second wave of the COVID-19 Pandemic.World Sickle Cell Day is a UN recognized day to raise awareness of Sickle Cell at National and International level.

On 22^nd December 2008 the United Nations General Assembly (63^rd session) adopted a resolution that recognized Sickle Cell Disease as a Public Health problem and “one of the World’s foremost genetic disease”. The resolution calls for members to raise awareness of Sickle Cell on June 19^th of each year at National and International level.The International awareness day is observed annually with the goal to increase public knowledge and understanding of Sickle Cell Disease, and the challenges experienced by patients and their families and care givers. It was celebrated first time on 19^th of June in 2009.

WHAT IS SICKLE CELL DISEASE? (SCD)

Sickle Cell is a Disorder of the Haemoglobin in the Red Blood Cells. Haemoglobin is the substance in the Red Blood Cells that is responsible for the colour of the cells and for carrying Oxygen around the body. People with Sickle Cell Disorders are born with the condition, it is not contagious, it can only be inherited from both parents who has Sickle Cell Trait and each pass on the gene of Sickle Cell to their children.

Sickle Cell Disorders causes the normally round and flexible Red Blood Cells to become stiff and Sickle shaped, stopping the blood Cells, and the Oxygen they carry, from being able to move freely in the veins around the body causing pain. This can cause episodes of pain.  These painful episodes are referred to as Sickle Cell Crisis. They are treated with strong pain killers to control the pain.

People with Sickle Cell are also at Risk of complications, stroke, Acute Chest Syndrome, blindness, bone damage, leg ulcers and Priapism (a persistent painful erection of the penis). Overtime people with Sickle Cell will experience damage to organs such as the Liver, Kidneys, lungs, heart, and spleen. Death can also occur from complications of the disorder. Treatment of Sickle Cell mostly focuses on Preventing and treating complications.

THE SICKLE CELL TRAIT

Sickle Cell Trait is inherited when only one parent has passed on the Sickle Cell gene, and will never develop into Sickle Cell Disorder. They do not have symptom from Sickle Cell Trait, so it is a good idea to have a blood test to see if you have the SC Trait. if you have the trait, majority of the Red Blood Cells are normal round shaped cells and some Sickle shaped cells may be present under certain conditions.

The Trait is not illness but if you are planning to have children, then certain factors have to be considered. If your partner does not have SC Trait, then any child you have will not have SCD, but there is a 50% chance that they could have SC Trait.

If you and your partner both have the SC Trait, there is a 25% chance that any child conceived may have SCD and 50% chance they will have the SC Trait.

SYMPTOMS OF SICKLE CELL DISORDER

1. Early signs and symptoms: Dactylitis – Painful swellings in the hands and feet of babies.
2. Chronic (Long term)
3. Anaemia – When there are not enough Red Blood Cells in the body
4. Unpredictable pains (crisis)
5. When the blood veins get blocked, it can cause pain and swelling in the area also known as crisis.
6. They get tired easily or experience fatigue – constant tiredness, feeling weak or lacking in energy because of the anaemia.   
7. Jaundice – yellowing of the whites of the eyes and skin.           

DID YOU KNOW?

1. Sickle Cell is inherited from both parents
2. Sickle Trait is inherited from one parent
3. Sickle Cell can affect anyone, although it predominantly affects people from African and Caribbean backgrounds.
4. Approximately 1 in 25 people in Sierra Leone have the Sickle Cell Trait
5. 2% of Babies born in Sierra Leone Have Sickle Cell Disorder
6. A simple blood test will tell whether you have Sickle Cell Trait or the Disorder.
7. Children with Sickle Cell Disorder are at increased risk for strokes and the risk is higher between the ages of 2 – 16 years.
8. Episodes of pain may occur in Sickle Cell Disorder and are generally referred to as crises.
9. The only possible care for the disorder is Bone Marrow Transplantation but this is only possible for a limited number of affected individuals who have a suitable donor.
10. A medicine called Hydroxyurea, can significantly reduce the number of painful crises in SCD patients.

2.SICKLE CELL DISEASE and CORONA VIRUS (COVID – 19)

COVID – 19 is an illness that can affect your lungs and Airways. It’s caused by a virus called coronavirus. The main symptoms include high temperature, headaches, Flu like symptoms and/or new and continuous cough. The current Risk level is high as the new infection rates of the second wave in our country continue to increase. The virus is back with more energy, tactics and camouflage. Some do not have cough or fever, it’s joint pains, weakness, loss of appetite and COVID Pneumonia. Of course, the death rate is higher, as it takes less time to get to the extreme.There is limited specific information for people living with Sickle Cell Disorders. However, below we have included all the available specific information there is and included the official guidance on avoiding catching or spreading the virus and what to do if you need medical help.

2.1. GUIDANCE OVERVIEW:Types of guidance and who they apply to:

• For everyone: We must wash our hands often, wear a face Mask, and Social Distancing
• For homozygous Sickle Cell Disorder (SS): Wash our hands often, wear face Mask, Social Distancing and Shielding

2.3. SHIELDING:  It is strongly advised that people with serious underlying health conditions such as diabetes, hypertension, asthma, HIV/AIDS, pregnant women or aged over 60 years; which includes homozygous Sickle Cell (SS), rigorously follow shielding measures in order to keep themselves safe.

What is shielding? Shielding is a measure to protect extremely vulnerable people by minimizing interaction between those who are extremely vulnerable than others. If you fall into an extremely vulnerable group (e.g. homozygous Sickle Cell SS), you are strongly advised to stay at home at all times and avoid any face to face contact for a period of at least 12 weeks. If you become unwell during this time you must contact the Sierra Leone Sickle Cell Society Care team for advice as usual to be sure that you receive the right treatment for your sickle cell disorder. In a medical emergency call 117.

2.4. Always wear your face mask if you must go out or when among a group of people. Make sure it always covers your mouth and your nose. Do not hang it under your chin as it will not protect you.

The Sierra Leone Sickle Cell Society is at number 25 Thomas Street and 88 Kissy Road; our doors are open for partners to join us in this great humanitarian struggle.