What made me want to be more responsible with my medications, specifically the ACTIMMUNE, was definitely the fact that I was going to be going to college soon.

My name is Matthew. I have X-linked CGD.

I’m 19, I’m a first year at college.

When I was very little, I got like very sick. They took me to the doctor, they did some tests on me and that’s when we found out that I had CGD.

I was put into an induced coma for about a month, and I actually got kind of a bald spot on the back of my head from bed sores. It’s pretty crazy. I still have that to this day.

If I wanted to live by, on my own, in the dorms, I had to know how to give myself the ACTIMMUNE, because it’s such an important portion of protecting my immune system.

I think a great first step in taking control of your own care is just starting with the small stuff. Taking baby steps, paying attention to the stock of medications. learning to order them when you have to, and also just like paying attention of when you need to refill a prescription.

I stay on top of my medication just by keeping a tight schedule, being consistent with everything, having reminders like on my calendar.

Today my parents’ involvement is usually just giving little reminders or asking if I need any refills.

One thing my CNE does to help me out with my transition into college is he talks to me about ACTIMMUNE, and he lets me know about events where I get to meet other people with CGD.

What I would say to teenagers who want to take more control over their CGD care: Talk to their parents about wanting to take more responsibility over their situation. Tap into the resources available to you through Horizon By Your Side.

When it comes to having CGD at work and explaining to your coworkers about CGD, I’ve restricted that conversation to really my supervisors. Because again, for me, when I’m healthy, it’s really not a conversation I need to have with a lot of people.

With my supervisors, however, they need to know that at any given time, I might be going into the hospital or I might need to be at the doctor’s office more than the normal person might be. So I’m always very upfront with my supervisors and tell them ahead of time when I first get hired that this is what this is and this is how it could present itself. And my supervisors have been incredibly understanding and accommodating. They understand that I could be out for long periods of time, and that in doing so would not jeopardize my status as a worker.

Let’s say I’m, I’m starting a new job or career, I will inform HR of what my current situation is with CGD and what might happen or what could happen and what things I may need to avoid, like a dusty area or, what I may need to do or what exceptions I might need because of CGD. And I’ve never had a problem with HR coming back at me for a negative reason. So they’re very understanding. I guess for me, they’ve been easy to work with.

When it comes to explaining CGD to coworkers, it depends on the coworker. Usually I try to keep my personal life and professional life separate. When I do explain it, it’s just kind of a breakdown of what’s going on and what the treatment is and why I might need to go to a doctor more or a specialized doctor, and then they’re usually pretty understanding of it.

So as far as career choices, I would choose a path that you like to do. But be aware of CGD and its treatment and what’s involved with that and what potential risks there might be, you know? I would say that, don’t get into like, you know, baling hay as a profession or farming. That might not be the best. But just being aware of what’s out there. Choose a clean profession. For me, CGD, when it came to my career and success, it motivated me. Because I wanted to prove to others that, hey, even though I’ve got this, it’s not holding me back in any ways.