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 their 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 disorder in the following situations so they can receive an education equal to other students:

• 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.

Be sure to download the IDF School Guide as a comprehensive resource when dealing with your child’s school.

Sharing at Work

For people with primary immunodeficiency (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.

Support

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. 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. You can find support from other members of the community through any of the following programs:

• IDF Peer Support Program provides people with PI, their family and friends with the opportunity to connect with others who share similar relationships to PI. The program matches you with a trained Peer Support Coach with shared experiences. They are patients and family members of all ages, ready to listen to your concerns, provide emotional support, and offer understanding and insights. You have the benefit of all the patients who’ve blazed a trail before you. They’ve been through this. They know what you’re going through, how you feel and how to help.
• IDF Get Connected Groups bring together individuals diagnosed with PI and family members in their local communities. Meetings allow individuals to share experiences, receive information and gain support. Visit the IDF Calendar events to see if there is a Get Connected group near you. If you would like to organize a support group in a new area, IDF can assist.