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.
Telling others 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 healthcare providers. Who you tell and when you tell them is a personal choice. Take this step in the way that is most comfortable for you.
People with PI and their families and friends often wear zebra-striped clothes and accessories, because people with PI are the zebras of the medical world—rare but beautiful and strong. It’s also a great way for children to describe their condition to others.
'Compromised: Life Without Immunity' is your voice when words fall short. Watch as Victoria, Dionne, Jerry, Ben, Kim, and Shane share experiences that might mirror some of your own. Their stories offer a powerful way to open up conversations about your diagnosis with family and friends. This documentary can be used as a tool to help build compassion and understanding for those around you.
You are not alone. Know that thousands of other people have been down this path before and are here to offer encouragement and insight. According to the National Institutes of Health, there are approximately 500,000 individuals in the U.S. with PI. As a patient-driven, service-based foundation, we provide programs to connect individuals and families living with PI.
Check out our community profiles to connect with others who have shared their experiences with PI.
Getting answers can help create peace of mind. Ask us anything, and we’ll consult with the experts.
Whether you are someone living with PI, a caregiver, or a healthcare professional, you’ll find articles, videos, podcasts, and more to deepen your understanding of PI.
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