*The translation of this article in French and Spanish has been made through machine translation and has not been edited yet. we apologise for any inaccuracies.
In August, we spoke to Precious, who was diagnosed with chronic myeloid leukaemia in 2012 when she was 33. Following a stem cell transplant in 2013 she began volunteering for Blood Cancer with Shine Cancer Support after identifying a real need for increased awareness, and representation within the BAME community.
After the stem cell transplant, Precious is passionate about sharing her journey and experiences with chronic myeloid leukaemia, to help raise awareness about blood cancers, especially among BAME community members who are under-exposed to public awareness building. She hopes to encourage other BAME members to speak out and support each other in this difficult journey. Her work is hugely inspiring and thanks to her commitment, Precious has brought together BAME communities struggling with shame and misinformation around the subject of chronic illness.
Precious’s chronic myeloid leukaemia’s diagnosis and subsequent treatment pathway were not without complications. Following her initial presentation to her GP, Precious was turned away and prescribed contraception. She was informed to trust her GP’s assessment and return in a few days should symptoms not subside. A few days later Precious collapsed in a tube station and was admitted to hospital, where she spent the next six months after eventual diagnosis.
What inspired you to reach out to Shine Cancer Support?
When I was diagnosed with blood cancer, I was lonely. I wanted to talk about it with other people my age going through the same thing. Shine is a small charity working with people affected by all cancers and they have more tailored support towards young people. They organise activities such as yoga and other social events to encourage meeting other people in the same boat as you.
What kinds of things are you doing to spread awareness?
We hold events and talks and create materials, such as the booklet, to support people living with blood cancer, as well as providing support for their friends and families. There is also an online forum for people from BAME communities where we can connect and support each other. We also organise physical meet ups and we refer people to Shine UK or to Blood Cancer UK where necessary.
What is the most rewarding aspect of your job?
I think the most rewarding thing is being able to speak to my own community and other minority communities, and to work with different people from different cultures and backgrounds. Being able to represent my community and seeing that we are driving conversation is something that is very much lacking and something that I am pushing to change.
How frequent is misdiagnosis amongst BAME communities?
Some of the most common symptoms of blood cancer include fever, fatigue, unexplained bleeding and red bruising. If you have darker skin, it is not as easy to spot the bruising. Many people within the BAME community have experienced not being able to spot the red bruises, and their experiences with their GP has been similar.
It is important for people to know that they it’s okay to go back if you think you have been wrongly diagnosed and ask questions, as this is where you can get help and support. For example, we don’t always have access to clinical trials as we don’t know about them. So, make sure if you are not happy with the advice or treatment to go back.
How do you feel that the BAME community is treated?
We don’t feel that we are heard. If we go back and say that we don’t feel right, we think we are treated differently to our Caucasian counterparts. Without early diagnosis, there is no early access to treatment, which affects our outcomes. Additionally, giving blood and donating organs is less well understood, and more taboo within our communities, so access to blood products and transplants is harder when we need them. For example, the first time my family heard about stem cell transplantation was when I needed it. Although my brother wasn’t a 100% match, we were able to participate in a clinical trial.
How can we encourage more people from BAME communities to donate blood?
Giving blood is something that is not as common in the BAME community, mainly due to a lack of awareness around the subject and the stigma attached to it. Ultimately, we can all listen and empathise if we are able to understand other people’s experiences that are similar to ours. Our community tends to respond to things later, after they happen, and so we are less well prepared. The more we push policy and speak to our communities, the more we can encourage other people to speak up and get the help they need.
What advice can you give people who aren’t aware of the condition but want to help?
Speak to a GP if something does not feel right. If your issues or symptoms persist and you are worried, keep going back and say something is not okay. They might label you, but you know your body more than anyone else knows your body, so keep fighting for yourself.
World Blood Cancer Day 2022 was held on the 28th May, how do you normally recognise the event?
I attend events and talks. I have attended talks at the House of Lords in the past, meeting MPs on behalf of the charity. I also give talks to the BAME community, to medical professionals and caregivers, both in person and online.
Are there any major challenges you have had to deal with?
COVID is the obvious one, as we haven’t been able to do as much for the charity as we’d hoped to. However, in spite of it, we managed to produce an award-winning booklet available on the Blood Cancer UK website and also in hospitals around the UK. Our hope is that people can get the information they need from people who have had similar experiences.
What is the message you’d like to get out there?
It is important to keep pushing and driving awareness in BAME communities. My work comes from my experiences of my diagnosis and not being satisfied with the care I got pre-diagnosis. It is important for us to keep talking and fighting so that the landscape changes. It is estimated that 1 in 2 people will be diagnosed with blood cancer in the coming years, so I want to ensure that people’s experiences are better than mine, and that they are getting good support and treatment. There is life after cancer.
Precious is an inspiration, helping to drive awareness in minority communities and speaking out on the challenges of dealing with a devastating condition. Given the lack of diverse faces within the cancer support community, it is reassuring to see increased representation, combined with strength and passion, and the story of someone who has lived the experience of chronic myeloid leukaemia or any type of leukaemia that she is now sharing for the benefit of her wider community.
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