Phillip O. is a UK-born finance professional currently living in Atlanta, who was diagnosed with sickle beta zero thalassemia (a severe form of sickle cell disease) at 6-months old. Sickle cell disease creates problems with the structure and function of red blood cells, making them look like sickles or crescent moons. The shape causes them to slow down or cause blockage as they move through the body, causing unpredictable and excruciating pain. Phillip recently shared how he manages his condition and what keeps him going.

Hi Phillip. Thank you for sharing your story with us. Could you start by explaining what a typical day is like for you?

Sure. A typical day usually starts with some prayers and journaling, followed by breakfast, and then a brief workout. I might either do some weights in my house or take a walk, depending on how the weather is. I bought a bike this summer, so I'm getting back into my road bike game. Before I moved to Atlanta, I used to bike a lot more, and so that's actually a pretty enjoyable, kind of low-impact workout that I can do when the weather permits. Then my workday usually begins after that. I'm a finance professional, so finance is fun. I love the problem solving. My last role was a very big, global role, and I had stakeholders in China and other important countries around the world. Having a lot of different moving parts at once... solving problems on a global scale is something that I really enjoy. And then at the end of the day, it’s just being there for my kids, engaging with them, talking about their day, helping with school, that whole bit. That's kind of a typical day in the life, I suppose.

Ok, so let’s bring in sickle cell. How and when were you diagnosed?

Well, I was born in the UK and diagnosed there at six months old. My diagnosis was triggered by an early crisis – I don't know how it differs from here, but in the UK I received an initial transfusion. I think having that early transfusion and the way they dealt with it maybe has given me a little bit better outcome and less severity. So, in that sense I've been somewhat fortunate with sickle cell, but every day is always a challenge, just living with it, feeling it, managing it.

How do you manage sickle cell disease with your doctor? Do you receive transfusions?

In my entire life, I’ve actually only had three transfusions. And as I've gotten older, I've learned about the relationship with stress and what may be going on in my life – and how to balance those, so as not to trigger a crisis. Every day and every activity includes focusing on trying to stay grounded, trying to stay balanced, and not get too taxed or stressed. That also means making sure I'm doing right by my sleep. I've noticed if life is getting too stressful and I'm losing out on sleep, it might trigger a crisis that could land me in the hospital. So, there’s this constant awareness of how what I'm doing could potentially result in a crisis, and how I make sure I don't end up there. I see a nutritionist and a dietitian. I'm looking for ways to minimize anything that might trigger a crisis through what I'm eating.

You must work with healthcare professionals, too. What’s that like?

I see my hematologist two or three times a year and my primary care physician at least twice a year. But I'm the CEO of my health, and my doctors are my trusted advisors. It’s somewhat counterintuitive, but it becomes necessary. Especially when you find yourself in the emergency room with a doctor who doesn't have much experience with sickle cell. They're an expert on medicine generally, but nobody's going to be a greater expert on my health and my specific condition than me. So, I have to feel empowered to speak up and advocate for myself, and sometimes, when called for, maybe push back on the advice from some of my doctors. But I also see a nutritionist and a dietitian because decisions I make every day are going to have as much of an impact as the engagement I get with a doctor a handful of times a year.

Do you have a support structure outside of your medical and nutrition team?

When I was a kid, the Sickle Cell Foundation of California1 had a camp I attended from the age of six till I aged out. That camp experience, even though it was just a week every summer, helped... A lot of people with sickle cell, like myself, we're the only people in our family that have it, so it can be kind of alienating within your own family because your siblings and your parents, they sympathize with you, but they don't necessarily always understand what you're going through. Having a tribe of people who have sickle cell and understood my experience, was a big part of understanding, "Okay, this is what is going on with me, with my condition and my diagnosis, and this is how I need to manage it."

I just moved to Atlanta within the past year, but my doctor in Houston, where I lived previously, for maybe about 2-1/2 years, she was really, really good at staying in the loop with me whenever crisis pain was starting to get to a point of having to go to the hospital. And so, I could coordinate my care with her. Hey, if I'm in crisis and I feel like I'm going to need to get to the hospital, and she's got admitting privileges, she would often kind of be on standby to help, because when you're in the emergency room, you're not necessarily dealing with somebody who has expertise with sickle cell. In fact, it's possible you might be getting a provider who's never seen sickle cell. So, having somebody who's willing to be that voice and that intermediary, I think, has been a big part of my success in managing my sickle cell crises, especially when it comes to the emergency room.