Support for your life with chronic granulomatous disease (CGD)

People with CGD who are prescribed ACTIMMUNE® (Interferon gamma-1b)—as well as their caregivers—have access to Horizon Patient Services, a no-cost program that provides a comprehensive network of services.

The Horizon Patient Services support team includes a dedicated CGD nurse educator and case manager. The nurse educator acts as the main point of contact for all medical questions and concerns about CGD and treatment with ACTIMMUNE®. The case manager works with insurance companies to determine coverage and specialty pharmacies to coordinate delivery of ACTIMMUNE®. Additional support team members help people with CGD and their caregivers connect with others through social media communities, peer mentor programs, and live events.

Horizon Patient Services is committed to improving the lives of people touched by CGD.

Learn more about Horizon Patient Services  »

CGD Frequently Asked Questions

Horizon team members answer important CGD questions.

Read the full video transcript

Voiceover/Sound

CGD is an autoimmune disorder that is inherited. It’s never contagious. It’s something that you’re born with.

In a person who’s unaffected, their immune system can be exposed to many different specific bacteria or fungus and their body will engulf those bacteria and kill them. When you have CGD, your body still engulfs that bacteria, but it can’t create the chemical reaction that you need to get rid of it, and that’s what gets you really sick.

I had a mom ask me recently, well, can they go to the pool? Can they go to the beach? So I just tell them to avoid like rivers and lakes. They can go to chlorinated pools. The beach, they need to be careful with the sand, because like there could be some growth there. And I usually tell them, “Make sure that you follow up with your doctor. And ask the doctor if it’s okay.” But they need to be careful.

Another important aspect of living with CGD is just really doing some basic maintenance and home cleaning tips. Not having your child around if you’re going to tear up the carpet and replace it. Or if you’re doing any new construction or remodeling—those are just places where mold and dust lives, and it can really be a problematic. Making sure that your child doesn’t cut grass. No helping out raking leaves.

Some of the tips for getting the best care in the hospital, especially if they’re traveling and going to a different area is to have a plan, a letter from the doctor, that they have CGD, and the treatment plan. And also, to have a list of their medications and to have contact information with them. It would be a great idea for them to have the, the specialists, immunologists, the doctor, and the number and the address, because they might have to contact them to get more information.

What we offer to our patients is the part of education, support, and advocacy. It’s basically a lot of education throughout the cycle of their developmental stages in life. You know, we’re just a phone call away. They can pick up the phone and call us if they have any questions or they need support.

Having a CGD Nurse Educator along with you and your family on this journey can be very helpful. I feel as though it’s another ally, a person in your corner to really help educate you and your family and those who interact with your child or yourself. It’s a huge benefit to people to know that they have an advocate out there.

For more information about Horizon Patient Services, call 1 (877) 305-7704, Monday through Friday from 8 am to 6 pm ET.

Find additional support and resources from the following independent organizations dedicated to helping patients and families living with CGD:

Global Genes

https://globalgenes.org
Global Genes is a leading nonprofit organization for patients and families fighting rare and genetic diseases like CGD. Their mission is to provide connections and resources so people can become activists for their disease and feel empowered to keep moving forward.

Immune Deficiency Foundation

http://primaryimmune.org
The Immune Deficiency Foundation (IDF) is a national nonprofit patient organization dedicated to improving the lives of people with different kinds of primary immunodeficiency diseases, such as CGD. IDF provides a wide variety of resources for people with CGD, including information about diagnosis and treatment options, at www.livingwithcgd.org.

Jeffrey Modell Foundation

http://www.info4pi.org
The Jeffrey Modell Foundation is a nonprofit organization devoted to diagnosis, meaningful treatments, and cures for primary immunodeficiency diseases. Thirty years after its creation, the organization continues its mission of hope, advocacy, and action by supporting the medical and global patient community.

Miracle Flights

http://www.miracleflights.org
Miracle Flights provides financial assistance to low-income children for commercial air travel to obtain special medical care. Qualifying families can receive travel assistance for the child patient and up to 2 parents or legal guardians.

National Organization for Rare Disorders

https://rarediseases.org
The National Organization for Rare Disorders (NORD) is a patient advocacy organization dedicated to people with rare diseases and the groups that help them. NORD provides patients and families with helpful advocacy information, assistance programs, and connections to patient organizations.

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