By Carla Schick
Recently, we posted this question on the IG Living Facebook page:
What’s on your mind? Healthcare reform? Insurance issues? Relationships? Start a discussion and let’s see where it goes!
Joanna Tierno wrote an encouraging response:
“Chronic Illness can stress relationships in a big way. You can’t always change things, but you can change how you react to them. It’s simple advice you hear all the time, but there is some truth to it. Next time when things are getting to you, try to react differently and see how that goes. Try to view things with more hope and more patience.”
We were inspired by Joanna’s insightful comment, so we decided to reach out to her. Here, she shares with us her positive approach to life.
IGL: One of your Facebook comments talks about the ridiculous length of time it takes for patients to get diagnosed. What is your condition, and how long did it take your doctor(s) to give you a diagnosis?
Joanna: My condition is a primary immune deficiency disease (PIDD) called hypogammaglobulinemia. I first started showing symptoms at about 6 months of age, and was diagnosed with failure to thrive. By the time I was about 5, I had frequent bouts with pneumonia, bronchitis and ear infections. When I was 12, my doctors realized that my immune system wasn’t going to develop into a normal one, so they suggested that I try immune globulin (IG) replacement therapy. My family was afraid of the treatment and my PIDD, so I wasn’t given IG, and they never told me the name of my diagnosis.
It wasn't until my early 20s, and after many doctor and hospital visits, that I finally found out what was wrong with me and started treatment with IG. By this time, in addition to prolonged debilitating infections, I was also diagnosed with thrombocytopenia, and suffered from severe migraines and neurological problems that baffled my doctors.
I am a huge advocate for early diagnosis and treatment because of all the unnecessary fear, frustration and suffering I endured before starting IG therapy. I am very lucky that I do not suffer from additional permanent damage from having my PIDD left untreated for so long, but being so sick during such critical years of growing up did affect many areas of my life. My hope is that one day the road to diagnosis for others will be much shorter than mine, and that when patients are diagnosed, they are also given information about the available support for PIDD.
IGL: The quotations on your Facebook page inspire action. How have you been able to take action and spread awareness about your diagnosis?
Joanna: I’ve been fortunate to be able to volunteer with the Immune Deficiency Foundation (IDF), and I’m always looking for new ways to reach others and educate them about PIDD. I’ve done everything from awareness tables at my local beach fair, to giving speeches about PIDD at churches, community meetings and even my local police precinct. In addition, I’ve had the opportunity to visit Washington, D.C., with IDF for Advocacy Day, and I’ve also reached out to all my local representatives on my own. I’ve been interviewed by local media (both television and magazines), and in general, I try to take advantage of every opportunity presented to me so that I can spread the word about PIDD, even if it’s a bit intimidating.
IGL: Your responses to our Facebook post offered some wonderful encouragement and advice for our Facebook fans. What advice and encouragement have you taken to heart over the years?
Joanna: When I was a little girl, I used to visit my neighborhood home for seniors after school. I think I received some of the best advice from some of the elderly who I used to talk to there. Although they came from various backgrounds and had different stories to share, the one thing that everyone always told me was that life goes by fast and to live it the best you can. I’ve really taken these words to heart, and I am finding them to be very true so far. What I’ve added to it is that because life is short, don’t let anyone or anything intimidate you! It is OK to fail sometimes, but it is less OK to never try.
IGL: What have you learned about yourself since your diagnosis?
Joanna: I was sickly growing up, and because no one really understood what was wrong with me, I think I was seen by many people as fragile or weak. When it takes you over a month to get over the same thing everyone else got over in a day or two, it’s hard not to see yourself in those terms too. Since I started learning more about PIDD, I see all my experiences through a different lens. I no longer see a weakling, but instead, I see someone who is very strong and resilient. I bounced back time and time again from severe infections, and on many levels, was still able to keep up with others who did not face these constant obstacles. I have true courage and determination.
IGL: Finish this sentence: If time, money and health were no obstacle, I would…
Joanna: Surely raise a lot of awareness about PIDD! I don’t think there would be any stopping me then.
IGL: What advice do you have for others?
Joanna: To never give up and to make the best of things wherever you are right now. If you’re too sick to get out of bed today, try to enjoy the movie you’re watching or something else that’s not so bad about today. Also, even little steps and little things you do can make a difference. I think sometimes problems can seem so big that many people feel like they can’t do anything about them and feel helpless. Always believe you can have some positive effect. The result may be small, but each of us really can make a difference!