Living Beyond Sickle Cell: A Gene Therapy Story

One of my favorite parts of my job is getting to know the incredible people behind the diagnosis.

In honor of World Sickle Cell Day, I interviewed my patient Ryan to talk about his journey with sickle cell anemia, what life was like before gene therapy, what changed afterward, and what he wishes more people understood.

His answers were honest, powerful, and a reminder that behind every diagnosis is a person navigating far more than most people realize.

Here's his story.

Before gene therapy, what did a day in the life with sickle cell look like for you?

A day-to-day basis for me, at the peak of my sickle cell, was brutal. It consisted of pills, pills, and more pills. And the funniest thing was that they never worked. They always messed up my stomach and didn’t really help at all.

In 2023 you experienced a major hospitalization that required life support. How did that experience impact you physically and emotionally?

The way it impacted me was draining. Physically, it was like hell. Imagine going to physical therapy just to get back to 50% of what you used to do. Imagine the next day not being able to walk, speak, or even move your body for weeks, and when you finally do, you need a walker. As someone who was an active young man, it was like hell.

Seeing all my friends doing things I wish I could be doing.

Having to stop school, losing my job, and losing my sanity.

Emotionally, how the coma affected me is something I still deal with today. It really changed my life, and I’m still recovering from it. I still can’t fully go into detail because it’s hard for me to explain.

The only thing I can say is that I’m tired emotionally and mentally.

What was the hardest part of living with sickle cell that most people never saw?

The hardest part about living with sickle cell is the fear.

Sickle cell is one of the few things you can’t really prepare for. Imagine living every second of the day in fear that you might get a pain crisis.

To explain a little more about sickle cell crises, there are different types of pain you feel, but for me there were mainly three. The first one was like imagining someone slicing you with a sword. Yes, I know it’s dark, but it gets worse. The second one was like someone shooting you. I know it sounds crazy, but I’m being for real. The last one, which is the worst in my opinion, is like someone stabbing you over and over again. Not just once — nonstop stabbing.

Now imagine having that fear throughout the whole day, knowing this can happen at any time. For example, for me, I tend to get crises when my oxygen gets low. I already run on low oxygen, so anything I did could send me to the hospital. However, when I’m at my weakest is when I sleep. My oxygen gets extremely low, causing me to sleep with an oxygen tank every day. That’s something not even my close family knows.

After all that, there’s something even harder I had to deal with: acting like I was okay. I have a very high pain tolerance, so I usually waited until the pain became unbearable before saying something. I also hate when people worry about me. I’m grateful for it, but it hurts my heart knowing people are worried about me.

So with that being said, I had to put on an act for years. I had this act on at school, work, church, even at home. It was terrible for my mental health because I wasn’t being myself.

I was too worried about affecting the people around me with something I was born with. It got to the point where I thought it would be better to help everybody by ending it all. But I’m so thankful for the opportunity God gave me, which was gene therapy.

I never thought I would be able to feel normal, but here I am. I really want to say more because this question is so good, but I would be here for hours. So to sum it up, the hardest part was the fear and the act I had to put on.

What has changed the most physically, mentally, and emotionally since gene therapy?

What changed the most is that I can actually achieve my goals. I know it sounds basic, but being a sickle cell patient is hard. You have so many goals and things you want to do with your life, but you can’t. Now I’m able to live a normal life and have a chance to achieve my goals and make my parents proud.

Physically, I feel like I can do anything. Mentally, I’m still working on things, but that fear is gone, and that’s something that has definitely changed.

You mentioned that you're more social and doing more now. Can you talk about how not constantly worrying about a crisis has changed your life? Was there a moment when you realized, "Wow... my life is actually different now"?

Having sickle cell forced me to say no to a lot of things.

Things like going out to play basketball or even just hanging out. The reason was that at any time I could get a pain crisis and have to spend the night, days, or even weeks in the hospital, and it just wasn’t worth the risk.

But now I don’t say no to things. I say yes, and it feels so good. I never thought saying yes would make me more social, but it did because now I can do “normal” things.

For the second part of the question, I have two moments where I realized, “My life has changed.” The first one was going to college in person. I know it’s probably not super exciting to other people, but it was to me. It hit me right there, and I said to myself, “I’m normal.” I never got the chance to experience college life or even a college schedule, and now I do. I will say it’s tiring, but it’s the kind of tiring I can manage because it’s not sickle cell related.

The second moment was back in February when I got to play golf with family and friends. Usually when I do any physical activity, I would end up in the hospital. However, that was the first day where I felt 100%, and that was a moment where I said, “My life has changed.”

If another sickle cell warrior is seeing this and feeling scared, overwhelmed, or uncertain about their future, what would you want them to know?

KEEP ON FIGHTING.

Yes, it’s hard, and sometimes you want to quit, but don’t. Hang in there because trust me, when you get your chance for gene therapy, you never want to feel that pain again.

I had to wait 21 years for my chance. I hope nobody has to wait that long lol, but when I finally got it, it was life changing. I know mentally you might think about giving up, but keep holding on because the prize is worth it.

Before gene therapy, sickle cell was helping write your story. Today, what story are YOU writing?

I honestly can’t even answer that question because I don’t even know yet. But when I do, I’ll let you know.

For many people, not knowing what's next feels scary.

For Ryan, it represents something different.

Possibility.

For the first time, he has the opportunity to discover who he is beyond sickle cell.

And that may be the most powerful outcome of all.

Thank you, Ryan, for allowing us to learn from your journey and for reminding us what we're truly working toward.

Happy World Sickle Cell Day.

I created a FREE frequency-based meditation for sickle cell crises. Sound and frequency is the future of medicine! Listen HERE!