CGD is a rare diagnosis and most people don’t know about the condition. Parents and individuals should learn as much as they can about the disorder, the treatments, and life after the treatments so that they can manage care appropriately—from the doctor’s office to school to the workplace.
Advocacy in Healthcare
Communication is crucial to good healthcare. Whether it is for yourself or someone you love, taking an active role in healthcare results in greater satisfaction and results. The following is a list of tips to remember when negotiating the many healthcare professionals that you will come into contact.
- Ask questions of doctors. Bring a notebook and pen to appointments to record notes, and to jot down questions that may arise later.
- Don’t be afraid to be assertive. The patient’s health is more important than risking what may be perceived as being rude to a healthcare staff. Most healthcare staff, including doctors, welcome questions and view the patient or parents as part of the child’s healthcare team.
- Trust your instincts and question procedures that seem illogical.
Parents and caregivers of a child with CGD will be the voice of that child for years to come. Because CGD is such an unknown condition, parents are advised to keep a copy of all medical records, including test results and informational sheets, so that other future healthcare workers, as well as staff at schools, can be educated on the child’s condition. Get a copy of medical procedures and test results and keep them in a binder. Electronic copies are more difficult to organize and present at meetings with other people.
Advocacy and school
Living with a primary immunodeficiency such as CGD can affect your child’s education. They may be absent more which can lead to falling behind on work and friends asking why they aren’t at school.
Even though your child may be doing well following treatment, it is a good idea to inform school staff about the child’s health condition and to develop a 504 Plan as a safety net in the event of excessive absences or a disease outbreak at the school. A 504 Plan will provide you with options that you might not otherwise have. The 504 Plan can ensure the following:
- The school will make accommodations, such as providing missed school work, allowing test make-ups and offering extended time for homework, should the child be absent from school.
- Teacher will wipe down desks with disinfectant each day.
- The child will use only his or her own school supplies, and not share with classmates.
- The child will have access to a clean bathroom.
- The teacher will not attend school if he or she has a cold or virus.
- The teacher will let the family know if he or she receives a live vaccine which could spread a virus to the child with SCID.
- The school will alert the family if there is chicken pox exposure.
For a more extensive guide on communication with school officials about a child with CGD, click here to link to the Immune Deficiency Foundation’s School Guide for Students with Primary Immunodeficiency Diseases.
Advocating in the Workplace
For people with a primary immunodeficiency (PI), such as CGD, employment is about more than just making money and job satisfaction. You need a job that will allow you to perform at a high standard with your disorder and will offer good health insurance benefits. There are many people with CGD who have amazing jobs and you can be one of them.
During a job search and application period, you do not have to disclose that you have PI unless it affects completing essential job functions. After you are hired, you do not have to disclose this information unless you are requesting an accommodation. To learn more about your rights as an employee, go to https://primaryimmune.org/living-pi/employment