As part of our 'Black Blood Appeal' Campaign and in the run up to our 1st Blood Drive, we asked our 4 ambassadors who are affected by Sickle Cell Disease some questions to raise awareness about Blood Donation and Sickle Cell in the African-Caribbean Community. Each of their stories are unique, yet reiterate the same message: the need for more black blood donors.
Name: Alidor Gaspar
When were you first aware of your condition? First memory is age 5
What do you do? Missionary/Artist
What do you do to raise awareness of sickle cell anaemia? Music, workshops, social media and word of mouth
State an interesting fact about yourself: I met the queen at age 7
Have you received a blood donation part of your treatment? If so, how many? Yes, I receive an exchange transfusion every 6 weeks. I started in November 2018 and haven’t had a crisis since then.
Why is it important to have more black blood donors registered to donate blood? Because they are a better blood match for black people with sicklecell.
What are the main symptoms and complications that you deal with from having the condition and how are these usually managed? Body pains, I usually try to keep hydrated and take any tablets needed.
How has sickle cell anaemia affected your life? Negative/positive impact: Positively it has allowed me to take my health more seriously, it has allowed me to meet some amazing people who have the same struggles and has allowed me to raise awareness on some great platforms. Negatively, I didn’t get to do everything I wanted to do as a child as I had to watch my health closely.
Personal achievements and triumphs you’ve celebrated despite your condition: I released my first EP in 2015 and it charted at no.4 in the UK official Christian & Gospel Charts and no.4 in the iTunes Hip Hop Charts. I released my most personal song ‘Hidden Pain’ in March 2019 in association with the NHS and I was able to raise awareness on stations such as BBC 1xtra, Channel 5 News, Metro & more. I am now planning to release my debut Album in the last quarter of 2019.
How have you managed your condition and who has supported you through this time? I have made sure not to over-push myself and rest as much as possible. My family have supported me.
Take home message/memorable message to finish: Don’t allow your health to stop you from pursuing what God has in store for you.
What is one thing you would want people to know about sickle cell anaemia? As a black person, it’s important we know how much this affects our people. What can we do to help? Research, process and take action.
What are the most common assumptions/misconceptions people make? That we are exaggerating about our pain because it’s not physically evident.
What would you like health professionals to be more aware of when caring for patients with Sickle cell anaemia? Listen to us, believe us and study sickle cell to have at least a little understanding of what we go through, this affects us not just physically, but mentally and emotionally too.
Does anyone else in your family have sickle cell anaemia/sickle cell trait? Did your parents know if they were carriers of the sickle cell gene? My mother has sicklecell, my dad has the trait. They found out the other party was a carrier after I was born. I have several cousins who also have both.
Why is it important to have more black blood donors registered to donate blood? Because they are a better blood match for us. We need to do more for our community because it affects us ALL whether we see it or not.
JOIN OUR BLOOD DRIVE HELD ON THE 31ST OF AUGUST AT THE WEST END BLOOD DONOR CENTRE!
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