This month's warrior spotlight is Jenica Leah - advocate, author and charity director
Hemoglobin Genotype: hemoglobin SS (most common and severe form)
Share your personal journey with sickle cell disease and how it has impacted your life.
My personal journey with sickle cell has been somewhat of a rollercoaster. When I was younger I tried to hide it but the more symptoms and complications I experienced, the more difficult that became. I had no idea how serious sickle cell could be until I started getting diagnosed with more and more issues: stoke, acute chest syndrome, avascular necrosis, liver sequestration, gallstones, myonecrosis. On top of that, I realize there was no real cause for any of these issues, most were "just because" I had sickle cell. I relied heavily on recommended treatments such as blood transfusions, pain medication, hydroxyurea, blood thinners but began to realize that there was no real fix and every treatment came with its own list of side effects that then needed to be treated too. It was a vicious cycle that I didn't enjoy and knew I didn't want to stay in.
After having a hip replacement at 25 I was able to reduce the amount of pain medication I was taking which also reduced my liver complications and a few other symptoms. From then I began to change small things in my life that were in my control that I realized were triggers for crisis such as my diet, fluid intake, resting more, my living environment and being around people or in situations that would cause me stress.
Slowly I began to have less crisis and even though I still experienced a number of serious complications, I didn't lose faith that I would be able to remove myself from the cycle I was so desperately trying to get out of. 10 years later I am where I hoped to be; managing my sickle cell completely holistically. I don't know how long this will last for, but I plan to enjoy it and embrace it for as long as I can.
What are some common misconceptions about sickle cell disease that you would like to debunk?
People living with sickle cell are weak - with the amount of pain we go through in our lives, people who live with sickle cell are some of the strongest people I know.
Everyone who has sickle cell has the same experience - if you know someone who has sickle cell, that does not necessarily mean you know and understand what sickle cell is. It affects everyone in a different way and each person will have their own individual journey and experiences.
If you have the trait you are fine - I am hearing more and more people share their experiences of having symptoms of sickle cell when they only have the trait. As a result of the misconception that it doesn't cause any issues, they are ignored and not believed and some experience extreme difficulties. Everyone needs to realize that because sickle cell is so underfunded and underresearched it is impossible to know the full extent of the condition and sickle cell trait with a certain combination of triggers can actually be life threatening.
How do you manage the symptoms and challenges associated with SCD in your daily life?
There was a time when I couldn't imagine life without having to take some form of medication to manage my sickle cell; I believed that was the only way. However, after reaching my lowest point and being fed up with taking so much medication just to be left with severe side effects and no relief, I stopped taking everything and was adamant there had to be another way. Over the last 4 years I've been on a holistic journey which has meant no treatments or medication but a lot of new learning and understanding of my body. Being so in tune with myself that I can now identify most of my triggers and how to avoid them. As well as knowing the difference between the type of pain I may experience and how severe it could become. For example, I used to experience severe crisis every month with my period but I learnt that if I am able to rest on the first day and up my water intake, the pain is not so bad and will actually pass within the day. Compared to trying to keep up with my usual activities for the day which exacerbates the pain and makes it last a longer time.
Describe a particularly difficult moment you've faced because of SCD and how you overcame it.
My most difficult moments with sickle cell have been navigating romantic relationships. I do believe that there are people who wouldn't see sickle cell as a deterrent in a relationship, however I realize it is also a choice and for some people, deciding to be with someone who is "sick" isn't ideal. This isn't something I have overcome but it's something that I have accepted and am at peace with.
What advice would you give to others living with sickle cell disease or to their caregivers?
Having sickle cell doesn't mean you won't be able to enjoy life. Do all the things you want to do and try everything at least once, despite what someone else's experience with sickle cell may have been. Your journey is like a book full of blank pages, although you may seek inspiration from others, write your own story as you go and embrace every moment; good or bad.
Share any positive experiences or silver linings that have come from your journey with SCD.
My journey with sickle cell has made me into who I am today. My whole career and life journey for the last 10 years has become what it is because I turned my pain into power and wanted to change outcomes for other people living with sickle cell in the future. I wouldn't have become an author, started a charity or done any of the things I have done if I didn't have sickle cell. I believe things happen for a reason and despite the pain and everything else sickle cell has caused me, it has also been my superpower.
What are some ways you advocate for yourself and others in the sickle cell community?
I have a children's book series about sickle cell which is great for empowering young people with sickle cell.
I have a YouTube series 'conversations with jen' where I share the experiences of people impacted by sickle cell so that others can learn more about the condition and how it is different for everyone.
I am cohost on a podcast 'Let's Talk About Sickle Cell' which is exactly what it says on the tin.
As well as all of these educational resources I also work a lot behind the scenes in the UK with NHS England to improve care outcomes, NHS Blood and Transplant to encourage more people to donate blood, have regular awareness events in our community and I'm also interim president for the European Sickle Cell Federation driving change in access to care and policies for sickle cell patients across Europe.
Lastly, what is one important lesson or insight that living with sickle cell disease has taught you?
Living with sickle cell has taught me to appreciate every moment of life. It's impossible to know what tomorrow will bring and for me living with sickle cell, that could be a crisis or complication which instantly changes everything. I have gone from feeling fine to feeling like I might be taking my last breath in a matter of minutes. With this in mind, I do things that will make me happy in the moment and don't dwell too much on what has passed and what could come. Appreciating life’s little things is something I don't think I would be as good at if sickle cell didn't show me how suddenly things can change.
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