Connecting with carriers of chronic granulomatous disease (CGD)

Read the full video transcript

So I learned at a very young age that I was a carrier. When I realized that I was a carrier of CGD, it made me think differently on my life future and having more children. And the effects of if I did have another child of it having CGD or not having it.

After Ricky was diagnosed with CGD, they said that it had to come from somebody in the family. And so our whole family went down to the university, and we all got tested. When the doctor came in he sat down, and he just put his paper down on the desk, and then he said, “it looks like you’re the carrier.” You kind of feel guilty in a sense when you’re a carrier. You know, when you’re a mom that loves kids.

The advice I would give CGD moms is not to be so hard on yourself. I’ve had the experience of talking to moms. And I know this from speaking with my mother that there is a lot of guilt associated with this disease. My mom has felt that way because it’s passed down.

I was adopted. So I had no clue of any of my past medical family history at all. So there was just a big blank there. When I was a kid, I always had the butterfly rash. And I remember having joint pain. I have seen physicians, and I’ve actually been seen at the lupus clinic.

I think I started getting symptoms maybe about probably 10 years after I was diagnosed. I started noticing little bumps like my sister’s. She had lupus. And I’ve noticed the older that I get too, if I get a cold or something, it seems to settle in my chest longer.

Advice that I would give to another parent of a child with CGD would be if they started having symptoms, that they were seen by a physician to find out what’s going on with their system because as a parent, you have to be healthy to take care of your child.

And I would tell CGD moms it is absolutely not your fault. And I think they need to hear that. And I think they need to understand that despite everything that the child is going through, they could not do it without the support of the parents and the moms especially. I could have not survived without my mother.

Women carriers of X-linked CGD can be affected both emotionally and physically. Many times there’s a sense of guilt, frustration, and confusion as to why this has happened to them. Without proper help, these feelings may lead to depression and hopelessness. Watch the video above to hear stories from other X-linked carriers about how they manage taking care of themselves and their child with CGD.

Turn your inbox into a help box

Stay updated with helpful information about managing CGD.

Important Safety Information

What is ACTIMMUNE® (Interferon gamma-1b) used for?

ACTIMMUNE® is part of a drug regimen 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. CGD is often treated (though not cured) with antibiotics, antifungals, and ACTIMMUNE.

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?

Don't 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?

At high doses, ACTIMMUNE can cause (flu-like) symptoms, which may worsen some pre-existing heart conditions.

ACTIMMUNE may cause decreased mental status, walking disturbances, and dizziness, particularly at very high doses. These symptoms are usually reversible within a few days upon dose reduction or discontinuation of therapy.

Bone marrow function may be suppressed with ACTIMMUNE, and decreased production of cells important to the body may occur. This effect, which can be severe, is usually reversible when the drug is discontinued or the dose is reduced.

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.

In rare cases, ACTIMMUNE can cause severe allergic reactions and/or rash. If you experience a serious reaction to ACTIMMUNE, discontinue 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 cardiac 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 at 3-month intervals on ACTIMMUNE therapy

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 in severity as treatment continues. Bedtime administration of ACTIMMUNE may help reduce some of these symptoms. Acetaminophen may be helpful in preventing fever and headache.

What other medications might interact with ACTIMMUNE?

Some drugs may interact with ACTIMMUNE to potentially increase the risk of damage to your heart or nervous system, such as certain chemotherapy drugs. Tell your doctor about all other medications you are taking.

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, or call 1-800-FDA-1088.

The risk information provided here is not comprehensive. To learn more, talk about ACTIMMUNE with your healthcare provider or pharmacist. The FDA-approved product labeling can be found at or 1-866-479-6742.