Living with
chronic granulomatous disease (CGD)
The problem with pathogens
Pathogens (PATH-o-jenz) are small organisms, including bacteria and fungi, that can cause infection. It’s important for people with CGD to take extra steps to avoid bacteria and fungi and help prevent a serious* infection.
Bacteria and fungi can be found all around us
soil, mulch
gardens, house
plants
woodchips
playgrounds
standing water
lakes, ponds
dust
new construction
dander, dirt
carpets, pets
mold
barns, sheds,
basements, caves
yard debris
piles of leaves,
grass clippings
Different seasons, different risks
- Spring: Rain showers can create puddles filled with bacteria
- Summer: Dry weather can lead to more dirt and spores in the air
- Fall: It’s best to avoid hayrides or being around anyone raking leaves
- Winter: Clean humidifier tanks and be aware of plants and animals that are brought inside
Preventing infections
Learn the steps these families take to avoid serious* infections with CGD.
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.
Tips to help your family stay ahead of infection
Browse topics that can help you and your family take a more proactive approach to managing CGD.
Tackle the bathroom
- Install an exhaust fan to keep moisture out and prevent mold (a form of fungus) from growing
- Use strong cleaners (including bleach) to kill fungi or bacteria around the toilet, on the floor, or in the shower or bathtub
Keep shoes out
- Set up a bin or place a mat by the door (Remember: think about all the places your shoes go throughout the day and what they could carry in!)
Send plants packing
- Keep plants outside since potting soil can be full of fungi
Careful with the carpet
- Keep all loved ones with CGD out of the home while carpet is being removed or replaced (try to keep them out for at least a few days to make sure any dust and germs have settled)
Caring for pets
- When emptying the cat litter, wear a dust mask that fits over your mouth and nose
- Do all dog grooming outside the home to keep out any dander and dirt that come from their fur
Tips for a healthy home
People with CGD need to pay extra attention to preventing infections. Download these helpful tips to help keep bacteria and fungi from making your home their home.
Traveling can be full of fun, adventure, and excitement. CGD doesn’t mean you have to miss out. Check out these travel tips from others with CGD who are making the most out of trips for work, family vacations, and weekend getaways. Then pack your bags to enjoy your next destination.
10 tips for safe travels
Don’t forget your medicines.
Bring your medical journal in case of an emergency.
Carry a thermometer to check your temperature.
Wash your hands whenever you touch things in public areas.
Pack a bottle of hand sanitizer.
Keep medicines that need to be refrigerated in a portable cooler (not on ice).
Write down a list of emergency contacts to call if you become ill.
Keep a list of your doctors’ phone numbers on you.
Know the location of the nearest hospital.
Bring healthy snacks and drink plenty of water.
Most of the time, you don’t plan on a trip to the hospital. But infections can happen suddenly, so it’s important to be prepared. Here are some tips on how to get the best care at the hospital and what to bring to make the trip easier on you or your loved one.
Have your healthcare info ready
It can be a good idea to keep documents available online or easily accessible on your phone.
What kind of healthcare information should I include?
- Your primary care doctor’s name, phone number, fax number, and place of work
- All specialists’ names and numbers (like your immunologist)
- Your emergency contact’s name and number (like a loved one)
- A list of all prescription and over-the-counter medicines you’re taking
- Any allergies you may have
- A record of where, when, and what types of infection you’ve had in the past
- A record of the last time you went to the hospital and any tests that were performed (like blood tests)
Bring your CGD care plan
Fill out the information to share with your doctors at a moment’s notice.
Help your hospital team learn about CGD
Because CGD is rare, you may have to help educate the hospital staff about it. Use the following tips to help describe your condition:
- Get a letter from your doctor to show to hospital staff, explaining that you or your loved one has CGD
- Explain that CGD is a disease of the immune system that greatly limits the ability of the body to fight infections from certain bacteria and fungi
- Let them know that unusual infections are not uncommon in people with CGD
- Point out that just because you don’t “look very sick” doesn’t mean you aren’t
- Make it clear that a low-grade fever or a cold can be very serious and become potentially life-threatening
- Be firm that you need medical help. You know your body or your loved one better than anyone else
TIP: Get a copy of all paperwork from your hospital stay before you leave so you can keep your records up to date.
Share CGD basics with your medical staff
This resource can help others understand the causes and risks of CGD and information on how to manage it, including things to avoid.
Try to stay calm
A trip to the emergency room can be stressful and frustrating, but try to stay calm for yourself or your loved one.
- If you are waiting too long or you believe your needs are not being addressed, ask to speak to the nurse in charge
Advocating for the care you need
When it comes to CGD care, you play a very important role. You are responsible for putting together a care team that you trust. By speaking up, you make sure you or your loved one is getting the best care possible.
Managing your care team
Tips from medical professionals about how to get the best care from your healthcare team.
Dr. Artemio Jongco: Building a trusting and open relationship with your medical providers isn't always easy, but one good rule of thumb is to make sure that you're honest about what your expectations are, what your goals of care are, and what you expect from your providers.
Dr. Nicholas Hartog: The one thing I recommend is making sure you have a point person, you have somebody who is in control of the disease, in control of the team, talking with everyone, making sure all the specialists talk, everyone's on the same page, to get the best care out of the team that's helping to take care of your child.
Dr. Hana Neibur: CGD is a hard disease to understand, especially because it can do so many different things. So when you go to see your doctor, it's important to write down your questions before you go, and write down your answers. Get the information you need, and don't be afraid to ask those questions. You need to feel confident in the care your child is getting. And if you don't feel confident, you need to ask more questions.
[Dr. Artemio Jongco:] Patients' family members should feel empowered to demand that their doctors have open lines of communication with everyone on the team involved in delivering care. And then when things don't quite meet your expectations, or you feel that one part of the team isn't quite living up to their job, then make sure you let them know and give them a chance to fix it.
Consider partnering with a hospital social worker
A hospital social worker can be a great resource. They assist patients and their families with health-related problems and concerns. A social worker can:
- Understand a patient’s social, emotional, financial, and support needs
- Offer counseling to the patient and family
- Refer patients to a wide variety of community social service agencies
- Help patients access financial assistance and health insurance coverage
- Work closely with health insurers to determine a patient’s benefits
- Advocate for the patient
*An infection is serious if you have to go to the hospital and/or get intravenous (IV) antibiotics.
Need help managing life with CGD?
Discuss your care plan with a CGD specialist near you.
Approved Uses and Important Safety Information
What is ACTIMMUNE® (Interferon gamma-1b) used for?
ACTIMMUNE is used to treat chronic granulomatous disease, or CGD. CGD is a genetic disorder, usually diagnosed in childhood, that affects some cells of the immune system and the body’s ability to fight infections effectively.
ACTIMMUNE is also used to slow the worsening of severe, malignant osteopetrosis (SMO). SMO is a genetic disorder that affects normal bone formation and is usually diagnosed in the first few months after birth.
When should I not take ACTIMMUNE?
Do not use ACTIMMUNE if you are allergic to interferon gamma, E. coli-derived products, or any ingredients contained in the product.
What warnings should I know about ACTIMMUNE?
ACTIMMUNE can cause flu-like symptoms. At high doses, the resulting symptoms may worsen some pre-existing heart conditions.
ACTIMMUNE may cause decreased mental status, such as confusion, depression, and hallucinations. It may also cause difficulty walking and dizziness, particularly at high doses. These symptoms usually resolve a few days after reducing the amount of ACTIMMUNE you take, or if you are no longer taking it at all, as prescribed by your doctor.
Use of ACTIMMUNE may affect bone marrow function and may limit the production of cells important to your body. This can be severe and usually goes away after reducing the amount of ACTIMMUNE you take or if you stop taking it entirely as prescribed by your doctor.
Taking ACTIMMUNE may cause reversible changes to your liver function, particularly in patients less than 1 year old. Your doctor should monitor your liver function every 3 months, and monthly in children under 1 year of age.
In rare cases, ACTIMMUNE can cause severe allergic reactions and/or rash. If you experience a serious reaction to ACTIMMUNE, stop taking it immediately and contact your doctor or seek medical help.
What should I tell my healthcare provider?
Be sure to tell your doctor about all the medications you are taking.
Tell your doctor if you:
- are pregnant or plan to become pregnant or plan to nurse
- have a heart condition such as irregular heartbeat, heart failure, or decreased blood flow to your heart
- have a history of seizures or other neurologic disorders
- have, or have had, reduced bone marrow function. Your doctor will monitor these cells with blood tests at the beginning of therapy and every 3 months while you are taking ACTIMMUNE
What are the side effects of ACTIMMUNE?
The most common side effects with ACTIMMUNE are “flu-like” symptoms such as fever, headache, chills, muscle pain, or fatigue, which may decrease the longer you take ACTIMMUNE. Taking ACTIMMUNE at bedtime may help with these symptoms, and acetaminophen may help prevent fever and headache.
What other medications might interact with ACTIMMUNE?
Some drugs, like certain chemotherapy drugs, may interact with ACTIMMUNE and could make it more likely that your heart or nervous system could be damaged. Tell your doctor about all the medicines you take.
Avoid taking ACTIMMUNE at the same time as a vaccination.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/safety/medwatch, or call 1-800-FDA-1088.
The risk information provided here is not comprehensive. To learn more, talk about ACTIMMUNE with your health care provider or pharmacist. The FDA-approved product labeling can be found at www.ACTIMMUNE.com or 1-866-479-6742.
Approved Uses and Important Safety Information
What is ACTIMMUNE® (Interferon gamma-1b) used for?
Approved Uses and Important Safety Information
What is ACTIMMUNE® (Interferon gamma-1b) used for?
Approved Uses and Important Safety Information
What is ACTIMMUNE® (Interferon gamma-1b) used for?
ACTIMMUNE is used to treat chronic granulomatous disease, or CGD.
Approved Uses and Important Safety Information
What is ACTIMMUNE® (Interferon gamma-1b) used for?
ACTIMMUNE is used to treat chronic granulomatous disease, or CGD.
Approved Uses and Important Safety Information
What is ACTIMMUNE® (Interferon gamma-1b) used for?
ACTIMMUNE is used to treat chronic granulomatous disease, or CGD. CGD is a genetic disorder, usually diagnosed in childhood, that affects some cells of the immune system and the body’s ability to fight infections effectively.
ACTIMMUNE is also used to slow the worsening of severe, malignant osteopetrosis (SMO). SMO is a genetic disorder that affects normal bone formation and is usually diagnosed in the first few months after birth.
When should I not take ACTIMMUNE?
Do not use ACTIMMUNE if you are allergic to interferon gamma, E. coli-derived products, or any ingredients contained in the product.
What warnings should I know about ACTIMMUNE?
ACTIMMUNE can cause flu-like symptoms. At high doses, the resulting symptoms may worsen some pre-existing heart conditions.
ACTIMMUNE may cause decreased mental status, such as confusion, depression, and hallucinations. It may also cause difficulty walking and dizziness, particularly at high doses. These symptoms usually resolve a few days after reducing the amount of ACTIMMUNE you take, or if you are no longer taking it at all, as prescribed by your doctor.
Use of ACTIMMUNE may affect bone marrow function and may limit the production of cells important to your body. This can be severe and usually goes away after reducing the amount of ACTIMMUNE you take or if you stop taking it entirely as prescribed by your doctor.
Taking ACTIMMUNE may cause reversible changes to your liver function, particularly in patients less than 1 year old. Your doctor should monitor your liver function every 3 months, and monthly in children under 1 year of age.
In rare cases, ACTIMMUNE can cause severe allergic reactions and/or rash. If you experience a serious reaction to ACTIMMUNE, stop taking it immediately and contact your doctor or seek medical help.
What should I tell my healthcare provider?
Be sure to tell your doctor about all the medications you are taking.
Tell your doctor if you:
- are pregnant or plan to become pregnant or plan to nurse
- have a heart condition such as irregular heartbeat, heart failure, or decreased blood flow to your heart
- have a history of seizures or other neurologic disorders
- have, or have had, reduced bone marrow function. Your doctor will monitor these cells with blood tests at the beginning of therapy and every 3 months while you are taking ACTIMMUNE
What are the side effects of ACTIMMUNE?
The most common side effects with ACTIMMUNE are “flu-like” symptoms such as fever, headache, chills, muscle pain, or fatigue, which may decrease the longer you take ACTIMMUNE. Taking ACTIMMUNE at bedtime may help with these symptoms, and acetaminophen may help prevent fever and headache.
What other medications might interact with ACTIMMUNE?
Some drugs, like certain chemotherapy drugs, may interact with ACTIMMUNE and could make it more likely that your heart or nervous system could be damaged. Tell your doctor about all the medicines you take.
Avoid taking ACTIMMUNE at the same time as a vaccination.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/safety/medwatch, or call 1-800-FDA-1088.
The risk information provided here is not comprehensive. To learn more, talk about ACTIMMUNE with your health care provider or pharmacist. The FDA-approved product labeling can be found at www.ACTIMMUNE.com or 1-866-479-6742.