A Leicester mum has released a brave and painfully honest book about her struggles of living with Sickle Cell, and Avascular Necrosis – a debilitating condition which led to her having both of her hips replaced by the age of 29.
Esi Acey Eghan, has released her book ‘First & Last Time Mum?! My Sickle Cell Journey,’ in the hope of shedding light on the condition, which is particularly common in people of an African or Caribbean heritage.
After having her son Zion at the age of 25, the now 32-year-old also developed the debilitating condition Avascular Necrosis – a severe complication which often occurs in patients with Sickle Cell.
The condition, which is characterised by the death of bone tissue, lead to Esi needing to have her left hip replaced at 27, and then the right one, just 10-months later.
The condition left her with chronic pain, and unable to continue with her job as a mental health support worker.
However, she chose to rise above the situation by writing a book in the hope of helping others, raising awareness and “turning a negative into a positive.”
“I didn’t necessarily mean to put a book out there – I was just writing my thoughts and my experience of what we were going through at the time, but it’s only when people kept saying ‘you should write a book,’ that I thought, yeah I should actually,” she told the Leicester Times.
“Considering Sickle Cell is one of the fastest growing conditions in the UK, not many people know about it. I think it just needs to be spoken about a bit more,” she added.
“I just want to bring awareness to the whole condition, and bring awareness of what it’s like dealing with such an issue at such a young age.”
Esi said she was particularly keen to target young girls with Sickle Cell, and educate them about what the possible challenges could be.
“If two people with the trait get together, they have a one in four chance of their child also developing Sickle Cell,”she explained.
“People don’t know this fact. It’s just a very painful disorder to have, and can cause so many different complications, and I think we need to have knowledge of this so that people can make informed decisions about their partners,” she added.
“I was able to work since the age of 16, do normal activities with friends – school, college university… live normally basically. However, when I got pregnant all that was completely turned upside down – the Sickle Cell and my health went really bad, and I just wasn’t aware that it could do that.”
Sickle Cell Disease is an inherited blood disorder, which causes unusually shaped red blood cells. These cause problems because they do not live as long as healthy blood cells and can block blood vessels.
It is a serious and lifelong health condition, although treatment can help manage many of the symptoms.
Esi recently spoke out about her Sickle Cell journey, at a free community event, which was in alliance with black history month.
As well as celebrating her book launch, she used the October 1 event to raise awareness of both Sickle Cell Anemia and Avascular Necrosis, and to encourage more blood donations within the black community.
“It is my aim to continue on my journey of spreading awareness for these two causes as I continue to battle each and every day,” she said.
“I’m really proud and pleased with the feedback I’ve had about the book so far. I just really want to get the word out there and encourage more people to donate blood and know about this condition.
“If only one person buys it, at least I’ve played my part.”
To find out more about the book, or to buy a copy, visit: https://stresseasebyesi.com/
