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Explaining your diagnosis to others

When it comes to telling others about your diagnosis, there are two important things to know: it's your information to share - when, where, and how you want, and you just may be the first person with PI that they've ever met.

Sharing your diagnosis

This can be a source of comfort, but it can also be stressful. Deciding on the right time for you is important. It is fine to wait until you make sense of the diagnosis yourself before you share it with others. You may feel more comfortable sharing the news after you’ve done your own research and discussed it with your doctors. Who you tell and when you tell them is a personal choice. Take this step in the way that is most comfortable for you.

Your healthcare team

You will likely be provided with a great deal of unfamiliar medical information in the months following your diagnosis. It may be helpful to maintain a dedicated journal and write down all of your questions to discuss with your physician. Use the journal to take notes during all your appointments to inform other members of the healthcare team. Knowing as much as you can about your situation will empower you as you move forward.

Sharing at school

Living with a PI can affect your child’s education. They may be absent more which can lead to falling behind on school work and missing time with friends. If their school day is not affected by PI, it is up to you whether you say anything to the school about their diagnosis. However, it is important to tell your school about your child’s condition in the following situations:

  • They are absent or expect to be absent more than other students. 
  • They take medication at school. 
  • They need accommodations or adjustments made to their day, like more frequent restroom visits or rest breaks during physical activity.

If any of the above apply, you will want to meet school staff to explain your child’s PI and develop a written plan. Most parents of children with PI do not view their child as having a disability. You probably feel the same way. However, if you want the school to provide an accommodation, you should identify your child as having a disability since federal laws include requirements for how schools should respond if a student’s learning is affected by a health condition.

Sharing at work

For people with PI, 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 condition and will offer good health insurance benefits. There are many people with PI 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. If you choose to have those conversations with your employer, understand your rights as an employee before you disclose your condition.

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People with PI and their families and friends often wear zebra-striped clothes and accessories, which has become a popular way for all ages to identify with zebras. It’s also a great way for children with PI to describe their condition to others.


At the beginning of the PI journey, it may be helpful to know that thousands of other people have been down this path before, and you are not alone. According to the National Institutes of Health, there are approximately 500,000 individuals in the U.S. with a primary immunodeficiency. Many families walking ahead on the path have made it through these challenging days and are here to offer encouragement. Their experiences and insight can offer a vision of the way through the present and into the future. As a patient-driven, service-based foundation, IDF provides programs for patients and families living with primary immunodeficiency (PI). These crucial education programs help you to manage PI.