Managing a career while managing chronic granulomatous disease (CGD)

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When it comes to having CGD at work and explaining to your coworkers about CGD, I’ve restricted that conversation to really my supervisors. Because again, for me, when I’m healthy, it’s really not a conversation I need to have with a lot of people.

With my supervisors, however, they need to know that at any given time, I might be going into the hospital or I might need to be at the doctor’s office more than the normal person might be. So I’m always very upfront with my supervisors and tell them ahead of time when I first get hired that this is what this is and this is how it could present itself. And my supervisors have been incredibly understanding and accommodating. They understand that I could be out for long periods of time, and that in doing so would not jeopardize my status as a worker.

Let’s say I’m, I’m starting a new job or career, I will inform HR of what my current situation is with CGD and what might happen or what could happen and what things I may need to avoid, like a dusty area or, what I may need to do or what exceptions I might need because of CGD. And I’ve never had a problem with HR coming back at me for a negative reason. So they’re very understanding. I guess for me, they’ve been easy to work with.

When it comes to explaining CGD to coworkers, it depends on the coworker. Usually I try to keep my personal life and professional life separate. When I do explain it, it’s just kind of a breakdown of what’s going on and what the treatment is and why I might need to go to a doctor more or a specialized doctor, and then they’re usually pretty understanding of it.

So as far as career choices, I would, choose a path that you like to do. But be aware of CGD and its treatment and what’s involved with that and what potential risks there might be, you know? I would say that, don’t get into like you know baling hay as a profession or farming. That might not be the best. But just being aware of what’s out there. Choose a clean profession. For me, CGD, when it came to my career and success, it motivated me. Because I wanted to prove to others that, hey, even though I’ve got this, it’s not holding me back in any ways.

It’s possible to have a successful career while living with CGD. Hear from others with CGD about how they balance their career goals with their healthcare needs.

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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.