It may be helpful to organize a binder or folder that includes important health information and documents. In addition to having a hard copy, consider storing your information online using Google Docs or a mobile app like My Medical. This allows you to access your information no matter where you are. Include information such as:

• Your primary care doctor's name, phone and fax number, and clinic information
• All specialists' names and numbers (like gastroenterologist and immunologist)
• Your emergency contact’s name and number
• A list of medicines you’re taking and dosage
• Any allergies you may have
• A record of where, when, and what type of infections you’ve had in the past
• A record of hospital visits and tests performed

Because CGD is rare, you may have to educate the hospital staff about CGD. Use the following 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 clear that a low-grade fever or a cold can be very serious and life threatening. Be sure the doctors culture the infection to determine the specific type of bacteria or fungi. Be firm that you need medical help. You know your body or your loved one better than anyone else

Download the facts about CGD to share at the hospital here

Hospital social workers can be a great resource for you. They assist patients and their families with health-related problems and concerns. Some of their responsibilities include:

• Understanding a patient’s social, emotional, financial, and support needs
• Offering counseling to the patient and family
• Referring patients to a wide variety of community social service agencies
• Helping patients access financial assistance and health insurance coverage
• Working closely with health insurers to determine a patient’s benefits
• Advocating for the patient

Usually a doctor or a member of the healthcare team will request the help of a hospital social worker for you. If you aren’t contacted by a social worker during your stay, speak up. Having a hospital social worker helping you can make a stressful time a little bit easier.

A visit to the emergency room can be stressful and frustrating. It is important to 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. If possible, call your doctor ahead of time. That way your doctor can call the hospital and have everything prepared before you arrive.