Explaining CGD to Children with Chronic Granulomatous Disease

Chronic granulomatous disease (CGD)

and children

CRISTINA, mother of Liam and X-linked carrier of CGD

LIAM, born with X-linked CGD

Explaining CGD to children

Watch this video for answers to questions your child may have about CGD.

Read the full transcript

Voiceover/Sound

I get a variety of questions… Anything from how did I get this? Is it contagious? When will it go away? What’s the cure? Can they still go to school? Is this gonna be forever?

They definitely feel very isolated because it’s a rare disease– 'It’s' overwhelming to process it.

So, when I speak to a child about CGD, sometimes it’s confusing cause they don’t really know what’s going on inside them and they don’t, they can’t really understand that their body can’t fight off germs like a normal person could.

I just tend to tell them that, you know, when they were made, there was just a little different gene given to them. There was something different in them that came from their parents, and it causes them to be able to get sick faster.

I tell them it’s like a Pac Man. As soon as I mention that, about the Pac Man, their eyes light up and they get excited cause they can visualize that. It’s like a Pac Man that eats up the invader. But inside the Pac Man, they’re missing something that will destroy that infection. And they can’t kill that invader.

CGD is something you’re born with and it’s not contagious. CGD is a condition that you’re gonna have for the rest of your life, but it doesn’t mean it should be something that slows you down.

I usually let them know that it doesn’t mean that they have to be isolated from the world. It’s just that they need to be careful, you know, and that they’re okay.

And I just sort of give them some examples of things. If they get a little tiny cut, they need to be very careful and get it washed out right away as opposed to just continuing to run and play with their friends. And I really try to just get the point across that things that might seem small to their friends can really turn into big things for them.

It sometimes can get very exciting when they learn that they don’t have to do any yardwork. They don’t need to cut the grass or do any of the mulching or rake the leaves in the fall. They will immediately look at their parents and say, did you hear that? Did you hear that? I don’t have to mow the lawn any longer!

When children are ready to go to school, there’s a lot of educational material available. Not only for the parent to prepare for school, but also the school to prepare for the child.

One of the resources I really like to provide for my families is CGDConnections, and there’s also a Facebook page where people can go and connect with each other and talk about the challenges that they’re having or their successes with their journey through CGD.

Success at school starts with the right help

School offers children a chance to learn about the world around them and make friends. One way to help is to make sure parents and school staff are prepared for a child’s CGD needs.

Create a school plan

Support plans for your child

IEP
What is it?

A written plan customized to support students aged 3 to 22 years
Who is eligible?

Student must fit 1 of 13 disability categories

What’s in the plan?

Document outlines goals that include:

Current school performance

Goals for the year

Outline of special help the student will receive, including more time to complete tests

Who creates the plan?

By law, a multiperson team including:

The parent

The student’s teacher

A special education teacher

A school psychologist

A special education services representative

Sometimes the child

How often is progress reviewed?

Required at least once a year

How much does it cost?

No cost to families
504
What is it?

A written document for any student in public school who has a disability
Who is eligible?

Student can have any disability, including physical or mental impairment

What’s in the plan?

Doesn’t have to be written or list specific goals, but includes:

Specific accommodations for the student to participate in the classroom

Who will provide services and support

Who is responsible for making sure the plan is carried out

Who creates the plan?

No legal standard regarding who is involved, but typically includes:

The parent

The general classroom teacher

A special education teacher

The school principal

How often is progress reviewed?

Not required, but usually once a year
How much does it cost?

No cost to families

Support plans for your child

	IEP	504
What is it?	A written plan customized to support students aged 3 to 22 years	A written document for any student in public school who has a disability
Who is eligible?	Student must fit 1 of 13 disability categories	Student can have any disability, including physical or mental impairment
What’s in the plan?	Document outlines goals that include: Current school performance Goals for the year Outline of special help the student will receive, including more time to complete tests	Doesn’t have to be written or list specific goals, but includes: Specific accommodations for the student to participate in the classroom Who will provide services and support Who is responsible for making sure the plan is carried out
Who creates the plan?	By law, a multiperson team including: The parent The student’s teacher A special education teacher A school psychologist A special education services representative Sometimes the child	No legal standard regarding who is involved, but typically includes: The parent The general classroom teacher A special education teacher The school principal
How often is progress reviewed?	Required at least once a year	Not required, but usually once a year
How much does it cost?	No cost to families	No cost to families

Get a copy of the IEP/504 plan guide to share

Take this side-by-side comparison as a reminder of the school
support programs available for your child with CGD.

Download helpful school resources for you and school staff

Parents' Guide to CGD

Information to help parents get through the school year and educate school staff about CGD.

Teachers' Guide to CGD

Educational materials to help school staff learn about CGD.

Seasonal school-year checklist

A school-year planner for parents filled with reminders and CGD talking tips.

*An infection is serious if you have to go to the hospital and/or get intravenous (IV) antibiotics.

Taking care of the caregiver

Explore essential resources and support for caregivers and partners.

NEXT UP: Learn more about managing CGD for teens

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.

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?

Reduction in Immunoglobulins: There may be a progressive and prolonged hypogammaglobulinemia or decline in the levels of total and individual immunoglobulins such as immunoglobulins G and M (IgG and IgM) with continued UPLIZNA treatment. Monitor the level of immunoglobulins at the beginning, during, and after discontinuation of treatment with UPLIZNA until B-cell repletion especially in patients with opportunistic or recurrent infections.

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.

Chronic granulomatous disease (CGD)

and children

Explaining CGD to children

Success at school starts with the right help

Educate school staff about CGD

Ask for alerts

Discuss risky activities

Create a school plan

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Get a copy of the IEP/504 plan guide to share

Parents' Guide to CGD

Teachers' Guide to CGD

Seasonal school-year checklist

Taking care of the caregiver