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My first interview is with my very dear friend Kelly. Kelly and I met 5 years ago in Arizona at a camp for young adults with chronic or fatal illnesses. Kelly is one of the most beautiful people you will ever meet. She is compassionate and genuine. We have been fortunate enough to visit one another since our time in Arizona and I do hope we will see one another again very soon. Until that time, I am honored that she allowed me to interview her and share her sweetness and hopefulness with you!
Kelly would you tell the readers where you are from and how old you are. Kelly, 22, PA
What is the name of your illness(es)? Alagille Syndrome (AGS) - a very rare (only 1 in 100,000 live births) genetic disease that affects my liver, heart, bones, eyes, blood vessels, skin, facial features, and growth. I also have Chiari I Malformation, Hypothyroidism, Anxiety, and Mild Depression.
When were you diagnosed? I was diagnosed with AGS at 3 months old after my first surgery, a liver biopsy. I was diagnosed with Chiari at age 10 after a routine MRI. I was diagnosed with Hypothyroidism at 20 after way too many months of testing and doctors that wouldn’t listen. And just a few months ago I was officially diagnosed with Anxiety and Mild Depression.
What adjustments have you had to make in your life because of your illness(es)? I really haven’t made too many adjustments since, for the mot part, I was born like this and it’s all I’ve ever known. I have had to make some adjustments to my activity level and amount of standing/walking I do in the past few years due to heart and Chiari problems.
Do ever feel mis-understood (at any level or with any situation) because of your illness(es)? Sometimes it’s hard to deal with people thinking that either nothing is wrong with me - I'm just small and short or (if they do know) that I never deal with anything unless I'm in the hospital – neither of which is true.
Have you ever had a distinct moment, where you felt God’s hand in the journey of dealing with your illness(es)? I have always known that God is with me, especially before and after surgeries. I have a new thing (my last three or so surgeries) that I have fallen asleep on the operating table praying. It’s just a way that I have found to calm myself down and give me extra comfort in the last moments before surgery. Also, during my last inpatient stay, which was completely out of the blue and resulted in emergency surgery, I really felt God’s presence. When I was admitted I was in the most pain I had ever been in and then did not have the smoothest of stays. The timing was awful! I had less than two weeks left in college and had a ton of stress with that and other things on my mind. But, the timing was also perfect, because it was God’s plan. My favorite surgeon and the only one I will let touch me just happened to be on (not – God’s timing)! He is on maybe one weekend a month and he was there and did my surgery that Saturday afternoon. In the end, school, stress, surgery, and everything else worked out. Always try your very best to have faith and patience! Timing is everything and everything happens for a reason!
Is there a factor (i.e., faith, family love, hope, etc.) that helps you cope with the struggles of being chronically ill? I get most of my support from God, I always try to keep the faith and have patience. I know this is God’s plan for my life and He created me this way for a reason. My friends and family are also there for me.
What are your dreams? My ultimate dream (career-wise) is to work at the hospital that I grew up going to. It’s kind of like a second home and I can’t imagine working anywhere else! I also want to get married and adopt at least one child from a foreign country.
Is there a quote or scripture that you turn to when you are feeling down? "I can do everything through him who gives me strength." Philippians 4:13"We can not change our circumstances but we can ask God to change our attitude toward them. When we cast our cares into His sea of love, He changes not our situation but the way it affects us." ~author unknown
Are there any final thoughts you would like to share? Just a few things that having a chronic illness has taught me: I know its cliche, but don't judge a book by its cover! You never know what people may have going on with them by just looking! For example, some people are unable to walk long distances and have to use a wheelchair at times because of it - if you were to see a person in that situation, you would probably say/think "he/she is young and healthy – he/she shouldn't be in a wheelchair – he/she is just being lazy!" Please, think before you speak!
Do you have a website that you would like to share with the readers for more information about you and your journey? Sure, if you’d like to get more background and detail about me and/or follow my progress you can visit my medical website:
Kelly, thank you so much. I love you and admire you so much. Thank you for being my first, Face in the Crowd!
