By Arianna Kazemi
Recently, I got the amazing opportunity to experience the Immune Deficiency Foundation (IDF) National Conference in Baltimore. Every other summer, IDF brings together the primary immunodeficiency disease (PIDD) community for the world’s largest gathering of families affected by PIDDs. I was both nervous and excited. Excited because I was going to meet people who live with the same disease as me. I know that sounds a little weird, but I don’t meet many people with this disease so when I do it's pretty exciting — almost like a little kid waking up on Christmas day. But I was also very nervous. I guess you could say the usual teenager anxiety and insecurity came out in me: “I won't know anyone!” “Will anyone talk to me?” “Do I look OK?”
I was in the teen group for the weekend, which had kids from the ages of 13 to 18. Everyone at the conference, including the counselors, had a PIDD, was a carrier of the disease or had a sibling or parent with PIDD, so they could all relate to what I go through in some way. It was very interesting to hear everyone else’s life experiences in dealing with PIDD. My eyes were opened to the many variations of the disease. I realized I was very lucky to have been diagnosed as early as I was and to have medicine and treatment that works for me. It was such an amazing experience to discover there are so many people working toward awareness and trying to develop better methods of treatment. I am now inspired to go to the inaugural Walk for Primary Immunodeficiency in October. It’s an opportunity to raise awareness about PIDD and reconnect with some of my new friends.
In the teen group, we experienced a combination of team bonding, therapy sessions and informational sessions. Now, I know what you are thinking: Therapy sessions?! Team bonding?! How cheesy! I admit I wasn’t too fond of the idea either, but it wasn’t as bad as you think. No one had to speak if they didn’t want to. But I was reminded that everyone there is going through the same thing as me, so there is nothing really to hide or a need to put up a face. It was a little easier to share with everyone because they were so open and nonjudgmental. The team bonding wasn’t so bad either. It actually turned out to be fun! We played some games, had snacks and meals together, and did lots of activities. I’d say the highlights were a trip to the museum and a scavenger hunt. At some point, I stopped worrying about how I fit in and made many new friends from all around the country. My new friends can relate to me and understand my situation, and it feels good to get that support.
One thing I was really nervous about was that I had to do my infusion while I was at the convention. It was the first time I had done it away from home and without my dad. He is usually the one who helps me, so doing it completely alone was a big step for me. I was super nervous because I have to stick myself, and that is extremely hard for me. I have only tried to stick myself once before, and that wasn’t the best experience. But after all my anxiety about being independent, I proved myself wrong. I did my whole infusion without any problems, showing myself that I can be self-sufficient and in control of my treatment and medicine. This was a huge step for me.
Overall, I had a good weekend. Although I was initially nervous about the conference and doing my own infusion, in all honesty, I had nothing to worry about. I learned that trying new things can be scary and very nerve-wracking, but in the end, it can have very big rewards!