By Annaben Kazemi
I am a teacher. I’ve always been a teacher. Nothing excites me more than sharing my knowledge with others. I love breaking down complex concepts so they can be understood. When I’m teaching, there are moments when I see a light bulb go off that tells me whether the concept I am teaching has taken root. It is the single most rewarding part of teaching to know that I have helped in some way - especially when difficulties have been overcome. Teaching is more than just imparting knowledge; it’s mentoring students, seeing the big picture that surrounds them and advocating for them. For me as a junior high school teacher, it also has been about teaching students to advocate for themselves. And, that’s what makes this transition to my new role so easy.
As the new patient advocate, my role as a teacher has become more defined. I may no longer be in the classroom, but I am still a teacher. I may no longer be teaching algebra or language arts, but I’m teaching something about the complex world of immune globulin (IG). I am excited to use my advocacy skills toward a cause near and dear to my heart, enriching the lives of those living in the diverse IG community that my family has been a part of. Fourteen years ago, two of my children were diagnosed with primary immune deficiency disease (PIDD). I remember all too well the isolation and fear that gripped our lives as we struggled to make sense of the situation. It was in reaching out to others and sharing our common experiences that I found the ability not only to cope, but to help my children thrive.
The journey hasn’t always been easy, but the constant has been the support we draw from those within this community. What other community can you turn where people “get it” instantly when you say: “I’m so tired of hearing ‘But you don’t look sick!’?” I remember reading the first issue of IG Living magazine more than six years ago and being thrilled to have a forum for topics that affect our community. The irony here is that my PIDD daughter was featured in a picture in that very first issue in an article about the importance of being a part of a supportive community. The little girl she was photographed with is still very much in our lives. They have grown up together and have supported each other despite living far apart in two different states.
I never imagined this is where the journey would lead us. I consider it a privilege to share my knowledge and to continue to learn within the community I’ve been a part of since my children were diagnosed. Living with a chronic illness has its own unique set of challenges. I hope through our shared experiences to become a support and a resource for our community. I know that everyone’s journey is different, and I am looking forward to getting to know you and hearing your story.