My name is Dustin Palmer, and I am 20 years old.  I was a healthy, active child, with the exception of having asthma.  I attended school regularly and was a State Champion in Gymnastics.  By age 7, I had 3 sinus surgeries, my health continued to deteriorate and by age 10 I was no longer healthy enough to go to school or participate in gymnastics due to recurring sinusitis, pneumonia’s and many hospitalizations along with many months of continuous I.V.’s.  I was 10 years old when I was diagnosed with Common Variable Immunodeficiency or CVID, a disease my family and I had never heard of.   I have many complications from having CVID, i.e. Crohn’s Disease, Arthritis, Lymphoid Hyperplasia, a tumor on my pituitary gland.  I started IVIG treatments at age 10, infusing every 3 weeks, and now I infuse every 4 weeks.  I was quite ill for several years; not being able to attend school, church or go out much.  My health slowly improved, and I was able to attend school for half days when I was a junior and senior in high school as well as attend church and hang out with friends.

Today, I am considered by many a walking miracle, as I am able to live life to its fullest.    Living with CVID can definitely be a challenge at times--always having to remember to take my medicine, remembering dates for my infusions and doctors appointments, and just doing what’s best for my body in order to stay as healthy as possible.  When I was first diagnosed with CVID I didn’t really know what it was, and at times was scared and worried about what I might have to do.  After I learned more about PIDD I was not as worried anymore, and I began to take control of my PIDD instead of letting my PIDD take control of me.  This philosophy and my faith in God have and continue to help me cope with my CVID.  I still continue to face small challenges, but other than that I live a pretty normal life.  I attend college and will be a junior pursuing my degree in social work in August, hang out with my friends, and I’m always trying to have fun.

This year I had the privilege and the honor to be asked to join the IDF Teen Council.  Through the council, I am able to be an advocate for myself, and other teens that struggle with the same issues I face.  I get the opportunity to talk to other teens and tell them my story and at the same time get to hear their experiences with PIDD.  This year the IDF had its first Teen Escape Conference in Houston Texas.  This conference was just for teens that have PIDD. The conference provided me the chance to meet people who understood what it was like to have PIDD.  This was a great time to learn about how to take control of your life with PIDD.  We also had many fun times, and I made a lot of new friends.  This conference was a great experience, and being a member of the teen council has provided a way to interact and help others.

I was also involved in a regional meeting where I live in Tulsa, Oklahoma in 2008.  My friends, family, and I were in charge of the children’s program at the   Tulsa Zoo.  I took some children and teens around the zoo; we all looked at the animals, and just had a good time.  We also had some seminars for the kids and teens where they could talk about their PIDD and my sister presented a really interesting hand washing activity for everyone to participate in.  This was tons of fun, and a great day at the zoo.

This year I was honored to go to Capitol Hill in Washington D.C. to for the IDF.  The IDF was there trying to get Congressmen and Senators to pass bills for the Medicare IVIG Access Act which would allow Medicare to reimburse hospitals, doctors, and home health agencies adequately.  This was a great experience for me to meet with the leaders of my own state even though they weren’t so eager to sign on for the bill.  I think my mom and I were able to get our point across to these very important people.  Many of the people we met with had never heard of PIDD before.  So just going there and letting them hear our voices was a success within itself.  This was a great honor and I hope to get invited back to do it again in the future.  Having an immune deficiency is challenging at times, but has also led to so many new and rewarding opportunities in my life that I would not have had otherwise.