Learn How To Help Prevent Serious Infections With Chronic Granulomatous Disease (CGD)

Read the full video transcript

Some of the things that you can personally do to stay ahead of infections, keeping to your schedule for sure. And for me, it’s living a healthy lifestyle. I like to exercise and lift weights. And just kind of avoiding situations that could put you into potential infection. Some of the potential situations may be, you know, going into a musty basement or like a musty shed, or just driving down a dirt road with your windows down.

The key to lessening the severity of an infection is getting ahead of it. The worst thing you can do with CGD is wait. The biggest one for me is when I get a fever. When my body starts to get in a fever-like state. So if I have chills, if I feel hot, um, that usually doesn’t happen for me. If the fever lasts for more than 2 or 3 days, then I would begin to take action. I would go get a blood test or call my physician.

Some of the things that we did to avoid infections were when it was fall, no jumping in the leaves because it’s that time of the year where everything’s floating around. Bacteria, mold, needs a place to land, and they’re looking for a nice, moist place to land. Stay away from dry, dusty wind. Stay away from basements that that are moist and moldy and smell funny. Don’t even give that a second thought.

So my advice for other parents to stay ahead of infections is just make sure your kids are washing their hands all the time. Hand sanitizer. As crazy as it sounds, you know, make sure that you’re dusting. That there’s no dust or dirt on anything. Make sure that they know how to take care of themselves, whether that’s you know, coming in from outside playing, you know, go straight to the bathroom, and wash your hands. Or drinking from a water bottle. Just simple things like that.

Definitely take your medicine how you’re supposed to take your medicine. It all works together. And if you, you know, let one thing go and not you know, and not keep up on all of it and be consistent, you’re asking for trouble.

But let them enjoy life. Why keep them in a bubble? Sometimes you just gotta let them live their lives to the fullest.

Fungi and bacteria live all around us. It’s important to take extra steps to avoid them and help prevent an infection from becoming more serious. Cindi, a caregiver to her 5 sons with CGD, says, “Anytime there’s a fever or thick glands, I know it’s a warning sign and we have to go to the doctor.” Watch the video above and look below for more tips to help you stay 1 step ahead of serious infections.

Listen to your body

Many caregivers and people with CGD can tell when something isn’t quite right. In some cases, people with CGD have an unusual pain or their body just feels “off.” Caregivers might notice when their child has mood changes or is constantly going to the bathroom. If you or your loved one feel this way, it’s important to call your doctor. While you may think you’re overreacting, it’s always better to be on the safe side.

Spot the CGD signs and symptoms

To anyone else, a low-grade fever or a scrape from a fall isn’t a big deal. For a person with CGD, it can be serious or potentially life threatening. Infections in people with CGD are different because they don’t go away or they keep coming back. If you know what to look for, you can help stop them before they get out of control. Be sure to seek medical help for these common CGD signs and symptoms:

  • Skin infections that cause boils, blisters, and sores
  • Pneumonia
  • Constant diarrhea
  • Pain in the stomach
  • Pain when eating or peeing

Other CGD signs and symptoms you can’t see or may not notice right away include:

  • Infections in the liver or bones
  • Inflammation in the intestine
  • Weight loss
  • A child being small for his or her age

Prevention starts with you

It may seem obvious, but living a healthy lifestyle and taking your medicine as prescribed can help prevent serious infections. Antifungals, antibiotics, and ACTIMMUNE® (Interferon gamma-1b) are recommended for people living with CGD. Don’t use ACTIMMUNE® if you are allergic to interferon gamma, E coli-derived products, or any ingredients contained in the product. As these medicines are working in your body, you’re doing your part to help stay healthy.

Remember, with careful planning and staying alert, you can lower the chance of getting serious infections.

Turn your inbox into a help box

Connect with a CGD nurse educator. Get practical lifestyle advice. Stay up to date on CGD info.