Given that most patients with Chronic Granulomatous Disease (CGD) were diagnosed in early childhood3, you may be used to your parents taking the lead in booking your doctors’ appointments, reminding you about taking your medications, steering you clear of dangers, and handing health insurance matters. Now, it is your turn. Here’s what you need to know.
Take Control of Your Healthcare
Ideally, you should be able to manage all the responsibilities listed on IDF’s 18+ Healthcare Checklist. If this is the first time you are taking control of your healthcare, take a look at this checklist. Then, talk to your parents and healthcare providers to gather as much information as possible. They know your illness, treatments and what is involved in your care, and they understand insurance, which you can learn more about here. Knowing these things is a good start in taking control of your healthcare.
Staying Disciplined About Medication
For young adult patients with CGD, it is seductive to stop taking medication or to “take a short break” from your medication. You may feel healthy, and everyone tells you that you look “great.” You may have missed a day once and nothing bad happened. You may think that because you’re avoiding exposure to mulch or potting soil, that perhaps you can skip taking your antifungal medication for a while. However, Aspergillus is everywhere, even in the air that you’re breathing right now.
The fact is that many infections are caused simply because patients were not taking their medications as directed. Remember that the average rate of infection for patients with CGD is every 3.5 years, but that is only when prophylactic medications are taken each day.4
Some Patients with CGD May Experience More Infections Now
For some young adult patients with CGD, despite how disciplined they are about taking their medications and avoiding exposure to places where harmful bacteria and fungi are present, they may still experience more infections or related health issues at this age.
Depending on the type of CGD you have, you may be at risk for having more infections as a young adult. Researchers are still looking for answers regarding why daily prophylactic medications may become less effective for some patients with CGD at this age.
It is also important to note that many patients with the most severe forms of CGD are living well past their early adult years and are doing well. There is no “one size fits all” in CGD, and while it is difficult to contemplate how life could change as young adult, it is important to be prepared. For example, gastrointestinal problems may begin to become more difficult to manage at this time. An NIH study found that out of 140 patients with CGD, 32.8 percent had GI issues, 89 percent of whom had X-linked inheritance. While the majority of these symptoms present in the first decade of life, some patients with CGD develop these issues later.5 Meanwhile, some patients may experience more serious infections, such as pneumonia or liver abscesses that they did not have earlier in life.
For these reasons, the pros and cons of bone marrow transplant must be weighed heavily. As always, it is important to talk to your physicians and make a plan that is right for you – based on your type of CGD, your current state of health, and expectations for your future health. Click here to learn about bone marrow transplants.
These are difficult decisions to process, and remember that you are not alone. IDF is here to connect you with other patients who are dealing with similar issues. IDF Peer Support is a free resource available to you. Our trained, peer support volunteers are comprised of individuals with diverse backgrounds. Many are patients your age, and they are ready to listen to your cares and concerns, offer skilled emotional support, share their experiences, and offer their understanding. To get in touch with us go to Ask IDF or call 800-296-4433.
You can also contact Be The Match, The National Marrow Donor Program.
Professionally trained volunteers are standing by to help you learn about transplant:
- Inside the United States, call 1 (888) 999-6743
- Outside the United States, call 1 (612) 362-3410. Long distance or international charges may apply
As a young adult, you are entering a new stage in your life and taking more control of your life. Your family may be there to guide you as you create your own life. However, you are ultimately going to be the decision maker, responsible for your own future and possibly caring for a family of your own.
Creating Your Independence
Your parents have provided you with guidance and support throughout your life, and your relationship with them has evolved. As a young adult, your relationship is different than at any other time in your life. You appreciate all the things that your parents have done for you, but now you are making your own decisions, thinking about and planning for the future. Knowing how to manage CGD is essential to your future.
It can be a big shift for you since your parents have been managing your healthcare and school demands. It may be difficult for your parents to let go, fearing that you may not make the best choices. Even though you are in charge, it is helpful to keep in communication with your parents; turning to them for support and guidance doesn’t stop just because you are an adult. They can be very helpful!
At the age of 18, you are legally considered an adult. Therefore, it is important that you are in control of all aspects of your healthcare. Click here for advice on managing your healthcare.
Managing CGD will require some unique life adjustments as an adult. Support from your family, friends and an effective healthcare team will enable you to properly manage your healthcare and lead a fulfilling and productive life.
Employment and Health Insurance
Young adult patients with CGD, in choosing a job or career, must think in terms of ones that are suitable for their condition. It is important to consider factors like time and stress, and how they may affect your health. Also, it’s best to avoid certain occupations that involve exposure to materials that can harbor fungi, such landscaping or forest conservation.
In seeking employment, be aware that there are laws against discriminating against an applicant based on a chronic health condition. However, that does not mean that the laws are easy to enforce. You may want to familiarize yourself with these laws.
Patients with CGD work in all kinds of jobs. For many patients, the health insurance coverage associated with employment is the most problematic. Small employers, for instance, may not be able to cover you, so choosing an employer who can provide adequate health insurance may be important while considering careers. New Health Insurance Portability and Accountability Act of 1996 (HIPAA) legislation has improved the ability to transfer insurance coverage from job to job once you are insured. The Family Medical Leave Act (FMLA) also ensures continued employment in the face of prolonged work absences due to illness. Disability in this population is not common but can happen. You need to be prepared should this occur.
Health insurance is a concern that all people with CGD must face. Decisions regarding school or employment may be affected by insurance coverage. This issue cannot be taken lightly by anyone with a pre-existing condition. If you allow your insurance to lapse or do not look into the options that exist before coverage terminates, your ability to qualify for insurance may be seriously jeopardized. It is important for an engaged or married couple to face the issue of health insurance realistically and understand its importance in career decisions.
It is also essential that you understand how the Affordable Care Act (ACA) of 2010, also known as healthcare reform, affects you. The law puts in place strong consumer protections and provides new coverage options. Click here to visit the IDF Patient Insurance Center.
ACTIMMUNE® Assistance Program
For patients receiving ACTIMMUNE (Interferon gamma-1b), Horizon Pharma has a Comprehensive Personalized Patient Prescription Advocacy and Support Services (COMPASSSM) Program, which offers patients on ACTIMMUNE, their families and healthcare providers one-stop convenient access to support services and to Program Coordinators who are available to answer questions about the Co-Pay Assistance Program, the Patient Assistance Program and other patient support resources. For more information, go to www.compassforpatients.com or call 877-305-7704.
Build a Support System
You need to be able to take care of yourself independently and, possibly, under different living conditions. This may mean depending upon friends and significant others for help when you are need help or are sick. Learning to ask for support when you need it can be difficult, but you should assess which role your family members and friends are best suited to fill. Some may be helpful with logistics when you’re ill, for example, they can take you to doctors’ appointments or visit in the hospital. Others may be supportive in an emotional sense, like listening to your frustrations and helping you make sensible decisions.
- IDF Friends
Young adults can connect with others through IDF Friends, the private social community created exclusively for patients and family members living with PI.
4 Margolis DM, Melnick DA, Alling DW, Gallin JI. Trimethoprim-sulfamethoxazole prophylaxis in the management of chronic granulomatous disease. The Journal of infectious diseases 1990;162:723-6.
Source: Immune Deficiency Foundation, www.primaryimmune.org/young-adults. This page contains general medical information which cannot be applied safely to any individual case. Medical knowledge and practice can change rapidly. Therefore, this page should not be used as a substitute for professional medical advice.