Summary Report on Sickle Cell Disease Awareness
- Itsekiri NextGen Project: 2022 Session 21 Report
- Topic: Sickle cell disease awareness
- Date: Saturday 11/06/2022
- Volunteers Present: 4
- Total Number of Attendees: 62
- Timings: 9:00am – 1:00pm
- Venue: Former Caravan 4, Aja-Pessu (Pessu Town), Warri
- Main Topic/Activity: Sickle cell disease awareness
- Resource Person: Audrey Sickle Cell Foundation (ASCF)
Summary
The 22nd session of the 2022 Itsekiri NextGen project focused on Sickle cell disease awareness. Sickle cell disease is a genetic condition that affects the body’s red blood cells. This occurs when kids receive two sickle cell genes from each parent.
As a team, we feel it is important to create this awareness for our participants to enable them to understand sickle cell disease and treat people living with it with empathy, dignity, and respect.
Session Delivery
The session began with an opening prayer, which was followed by the singing of the Itsekiri anthem. Following this was a review of the community clean-up exercise from the last session.
The team from Audrey Sickle Cell Foundation led the participants on discussions on sickle cell disease. Some participants seem to know a thing about sickle cell anaemia, persons with the disease called, ‘sicklers’, cultural words associated with sickle cell disease such as ‘ogbanje or abiku’ and others who seem to know little or nothing about it.
Sickle cell is an inherited disease which is got from the blood. According to the NHS patient website, “genes come in pairs. You inherit 1 set from your mother and 1 set from your father. To be born with sickle cell disease, a child has to inherit a copy of the sickle cell gene from both their parents. This usually happens when both parents are “carriers” of the sickle cell gene, also known as having the sickle cell trait. Or it can happen when 1 parent has sickle cell disease and the other is a carrier of it”. Persons with AA have a round blood shape, and it takes about 3-4 months to form, but SS has a “Sickle” or banana or C shape and takes about 10-20 days, hence the constant illness.
The participants made a practical illustration of how the sickle cell genes can be passed on to the offspring. With parents having the AS genotype with four children. A child is likely to take the A gene from the father and the A from the mother to be of AA genotype. Another might take the A gene from one other parent and the S gene from another to be AS genotype. This means that the child is a carrier of sickle cell trait. Lastly, a child might take the S gene from the father and the S from the mother to be of SS genotype. This child will have sickle cell disorder.
To prevent one’s offspring from being SS, marriage between persons with AS and AS genotype and persons with SS and AS genotype is strongly discouraged, whilst being encouraged to marry people with the AA genotype.
Sickle cell disease affects the red blood cells in the body. There is no cure for it yet but can be managed with a bone marrow transplant which is quite expensive. Persons with sickle cell can live a healthy life by eating good food and vegetables, drinking water at regular intervals, taking their drugs regularly and must adhere to the doctor’s instructions.
The Founder of ASCF, Ms Audrey Mukoro, a sickle cell warrior, made the participants know that persons with sickle cell live a normal life like others. They shouldn’t be stigmatized, so there shouldn’t be a need to mock or laugh at anyone with SS. She urged the participants who don’t know their genotype to ask their parents. The Itsekiri NextGen team will also work with ASCF to run a free genotype test for Itsekiri NextGen participants.
Some participants asked questions like:
- Can SS be changed?
- What’s the meaning of As?
- Can AA and SS get married?
- Does sickle cell disease lead to death?
- What is a bone marrow transplant?
- Why do people with sickle cell get tired?
- Do people with sickle cell eat well?
They were given appropriate answers by the founder of the ASCF.
Other key activities during the session
Success Tuedongheye admonished the rest of the participants to be nice to persons with Sickle cell disease and not be abusive to them or stigmatize them. They should show empathy as it is a characteristic of a leader. This is because Itsekiri NextGen participants are future leaders.
Participants borrowed books from the Itsekiri NextGen library.
