About X-linked carriers

Hi, I’m Kelsey, I’m an X-linked CGD carrier, and this is what I do to bring my CGD into focus.

I feel like a typical day in my life doesn’t exist. Every day is so different. Being in real estate, being a mom, there’s a lot of moving parts. It’s all over the spectrum, whether it’s volunteering at my son’s school, working on my own properties, or out helping people find their homes.

In my free time, I like to travel. I like to be outside, so hanging out on a beach or a happy hour. I like to golf, just be out having fun.

My son is named Jack. He’s my little buddy. He’s my bestie. We do and see the world together.

Jack was born a normal, healthy baby. There was no concerns. Nothing was wrong. He had never gotten sick with anything, not even a cold, when he was an infant.

It was about three months between his first symptom and his official diagnosis of CGD. When he was initially diagnosed and I was told I was an X-linked carrier, that was kind of brushed away to the side for me because it wasn’t what I was focused on. I was focused on making sure my son was going to be okay, and what I could do to make sure my son was seen by the best specialists and the best doctors, and do everything I can in my power to make sure my son had a long, healthy life.

At the time, I didn’t really know what that meant to be a carrier, but as I’ve learned more and connected with others in the CGD community, I’ve learned that being an X-linked CGD carrier can cause a lot of symptoms and health risks long term. From little things like rashes or sensitivity to sun, all the way up to bigger things like anxiety, depression, joint pain, and even developing CGD later in life.

I thought I’m tired because I’m a mom and I’m working two jobs, but I’m actually diagnosed with something that makes you tired, or more tired than most people

I plan to continue to monitor my symptoms and follow my DHR results to keep my X-linked CGD carrier status under control.

I didn’t know at first that I needed additional DHR testing. I thought it was a one and done. It was through some advocacy groups that I learned your DHR level, over time, trends downward and that you need to monitor that.

I would love to see carrier status more brought into focus and have people seek out DHR testing to advocate for themselves.

If you checked back in with me in five years down the line, I will have hoped to have spoken with not only my current team, but maybe adding in an immunologist or an infectious disease doctor for myself, not only my son.

In order to keep your kids healthy, you have to keep yourself healthy. Knowing my X-linked CGD carrier status gave me power, and I want that for other carriers, too.