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Posted on 17. December 2010

IGL Fan Spotlight - John Scagliarini

By Carla Schick

John, who was diagnosed with common variable immune deficiency (CVID) in 2002, is a relatively new fan to our IG Living community. Recently, he responded to one of our daily Facebook questions:

Let’s see how creative you can be. Finish this sentence: You might have an immune dysfunction/chronic disease if…
“When you tell the doctor you have CVID and the doctor says there is nothing in your charts about a cardiovascular inflammatory disorder. Or, if a doctor says, “Give me a minute to review your chart.” And he does not come back until the next day!!”

We were inspired by John’s comment, so we reached out to him. Here, he shares with us his optimistic attitude on life.

IGL: Your response to our Facebook question was humorous. What helps you to keep a positive outlook on life?
John: It has been hard coping with CVID, but being sad and depressed all the time is simply just not an option for me. Being sad all the time will do nothing but make you sadder, and living in a constant state of depression will only sadden those around you. So, my only other option is to be happy, and if not happy, at least content. Dealing with CVID is tough because most people haven’t heard of it, and often don’t believe you when you tell them how sick you are. But you can still have good times and not feel like you have to prove to everyone that you are sick.

IGL: Who or what gives you inspiration?
John: My two main sources of inspiration are my mom and my family. They always show me love and support, even when they don’t fully understand a lot about my illness. I’m also encouraged by the inspirational stories that I read online from all my “zebra” friends.  Simply knowing that others are going through similar struggles is a great help and a great way to stay inspired.  

IGL: Since your diagnosis with CVID, what has been your most challenging obstacle? How did you overcome it?
John: My biggest obstacle with CVID has been obtaining and continuing my education. I was first diagnosed going into my freshman year of high school, and ever since then, I have missed several classes because of my many hospitalizations. On the upside, I’ve become very good at playing catch-up. With the help of my fellow classmates and understanding teachers, I was able to graduate from high school. And, with the combination of on-campus and online college courses, I have been able to earn my associate’s degree in civil engineering from Springfield Technical Community College. I’m also in the process of getting my bachelor of fine arts [degree] in architecture and design. And, although there have been a lot of speed bumps, I am slowly on my way to getting my degree. 

IGL: What have you learned about yourself since your diagnosis?
John: I have learned that my ability to cope with loss must be incredible, and that my ability to let go, forgive and forget, and take each day as it comes have all been pushed to the limit over and over again. I am a very strong and optimistic individual that has truly been blessed with the gift of getting joy from even the simplest things.   

IGL: Finish the following statement: If time, money and health were no object, I would…
John: Travel the world and study all the amazing architecture — both ancient and modern. I’d also like to raise awareness of CVID and the proper ways to treat it and detect it early to prevent long-term damage to the body, with a hope of finding a cure. I would also simply enjoy the fact that my health would be much less unpredictable, and I could make big future plans without the fear of having to cancel them. 

IGL: What advice would you offer others dealing with chronic illness?
John: I would tell them that this is not their fault, and it’s no one else’s fault either.  This illness simply came to be; it was not from anything you did, so don’t waste your time thinking of what you could/should have done differently. Also, remember that it is the bad times in life that allow you to truly appreciate and enjoy the good times. So take each day as it comes and never feel as if you are a burden to bear or a hassle. Just remember that, illnesses aside, you are just like everyone else, and you deserve to happy.

Categories: Fan Spotlight

Comments (5) -

Nancy Nicholas
11:04 AM on Friday, December 17, 2010

John Scagliarini is a tremendous inspiration to all of us Zebra's

Woody Auerbach
10:50 PM on Friday, December 17, 2010

I went to the page to answer the question you posed in this e-mail:  "Finish this sentence: You might have an immune dysfunction/chronic disease if..."
You go from doctor to doctor, trying to get your strange symptoms diagnosed and they precribe tranquilzers, sedatives and other medications, because they treat you as having some mental disorder.
A majority of myasthenics are treated this way for several years before being diagnosed.

Donna Hiebert
5:37 AM on Monday, December 20, 2010

John is an inspiration to me as well.  For someone so young he has great insight.  I have myastenia gravis and I refuse to let it limit my life, I have too much to live for.  True, the heat and cold affect me more and I am tired every day but I get up and go to work and continue with life.  A chronic disease has a way of taking you apart and re-arranging your life, it is up to you how you put back the pieces.  

susan watkins
9:55 AM on Friday, January 21, 2011

Yes, you surely know you CVID if more than 3 doctors, including at least 1 shrink, have diagnosed you with bi-polar disorder or some other serious mental condition, when you have never in your entire life had any of the symptoms.  I used to call it 'suddenly bipolar'.  You know you have CVID when you keep saying 'no, no, that's not it' to your doctors and the emergency room nurses roll their eyes when you keep coming back with your 'mystery' illnesses.  I would love to see those charts... wonder what the code is for 'crazy old lady'.  You know you have CVID when they keep you in the hospital because you are so sick but when they let you go next week no one can tell you why you were there in the first place.  You really know you have CVID when you become very sad and hopeless and you start to think that you are probably crazy.  This is around the time that most of us (the adult onset group) that you do get diagnosed.  Usually at this point you are making out a will.  

You know you have made it though, when you finally get hooked up with people who know what you are talking about and have had similar life experiences.  That means this Board and maybe one other.  Thank heavens for the Internet.  Imagine if we were CVID patients before it was even invented Smile.  

You know you are a CVID patient when you develope a basically happy persona because you are so damn happy to be alive, and so damn glad that there are blood donors whom have allowed us to reach for a 'normal' life.  I know that the best thing that ever happened to me was the day someone told me, 'You have CVID'.  God, what a great day.

Nancy Nicholas
6:28 AM on Saturday, January 22, 2011


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