Kacie Van Calster

My name is Kacie and I am 21 years old. I have had problems with AS since I was 13, but I wasn’t officially diagnosed until I was 17, during the fall of my senior year of high school. While I was growing up, my life revolved around sports, softball in particular. Nothing brought a huge smile upon my face like stepping out on the pitcher’s mound.  The diagnosis of AS crushed me, especially because I was getting ready to start my senior year of softball. On the other hand, it was very relieving to know that there was actually something wrong with me and that I wasn’t just crazy. It was really weird to talk about at first; I would always get the typical “doesn’t that only happen to older people?” responses.

I am now in my senior year of college. I am studying applied mathematics and I am hoping to start graduate school next fall. College has definitely been an interesting experience for me. When I first started, I just liked to ignore the fact that I had AS and still tried to do everything everyone else was doing. I wanted nothing more than to fit in. For the longest time I didn’t tell many people, but as my AS progressed I had to explain to my friends why I couldn’t always partake. I took it very poorly when people didn’t understand; looking back now, how could I expect a bunch of 18 year olds to understand? But I am forever grateful for the friends that did.

I have spent the last 6 months without a biologic. Prior to that I was on Humira for a brief time, after I had shingles my doctor switched me to Remicade. I was taking Remicade and Methotrexate for about 9 months. It definitely helped my AS a ton, but I was constantly sick and I just couldn’t take it anymore. It was rough missing a lot of school, but I couldn’t be more grateful to the awesome professors I have had. Currently I am on Celebrex, Prednisone and Sulfasalezine and I am doing the best that I have been in about 4 years.

I definitely struggled for a little while, but I definitely came out on top. I have an awesome family, two very caring parents and two awesome sisters. This might seem strange but I think AS has affected my life in more positive ways than negative ways. It probably has been one of the biggest influences in shaping the person that I am today and I can’t say I would change that. My newest philosophy is to make the best of what the situation is and I try not to spend too much time getting down or upset about something that is out of my control to change. You are never alone 🙂

21 Responses to “Kacie Van Calster”

  1. Dear Kacie,
    Thank you for sharing your story with us. You, young lady are very wise beyond your years. It took me a long time to get where you are and I feel that my life has been amazing because of my attitude, and yours will be too.
    Best of luck to you.
    Sincerely Cookie

  2. Dear Kacie, thanks for sharing. What a beautiful woman you are, and so smart too!!! Hope that you can find a medication so that you can get off the steroids.


  3. Great story, lovely photo.

  4. Kacie- you truly are wise beyond your years! I am so thankful that you have shared your story with us. I am so glad that you see the positives of life… you will be in my prayers, dear. I am sorry that you are dealing with AS, and I admire you so much! God bless you!

  5. Wow for your age your are amazing, I had the same problems from 13 and i’m now 42 diagnosed in 2003 and still don’t have my meds sorted!!!! you go girl!!!

    • Thank you Jane! I have been very fortunate to have such an awesome doctor. I hope you get your medications sorted out very soon!

  6. Thank you all for taking the time to read my story and for all of the kind words! The whole idea of this project is so amazin. It is awesome to read and talk with other AS sufferers and also with those with loved ones that suffer from AS 🙂

    • Kacie, Thank you so much for your kind words. I have wanted to do something profound in the AS community that would change them forever. I appreciate the fact that everyone is opening their soul and allowing us to find comfort, hope, understanding and acceptance in each other.

      Sincerely Cookie

  7. I am so proud of you sweetie that I can’t even find the words to express it. You have done an awesome job of dealing with all of the negatives thrown your way, and still to be so successful in everything you do! We are blessed to have you in our life. I remember you asking me one day, if I had known before I was pregnant that I had AS, would I have still had children. I am so sorry that you have to deal with this, but I can’t imagine my life with out you or your sisters!!! Love You! Mom

    • Dear Rene,

      I can imagine how proud you are of Kacie, she has an amazing spirit and wisdom that will guide and help her and others through her life.
      Sincerely Cookie

    • Thanks mom, like I’ve said- you set an awesome example for me to follow! and I have been very blessed to have such awesome parents 🙂 Love you!

  8. Hello Kacie, this is Saurabh from India. I, too am suffering from AS since I was in 7th standard. Later on its progress was quite rapid and in 2007 I was operated with Bilateral Total hip replacement (BTHR). Since then, I think my life has become much better. I take regular exercises and some breathing exercises like Pranayam (I don’t know whether you know this, but this belongs to Yoga) have helped me lot. A year ago I got my driving license too. So it all comes to this – You have to do your exercises regularly. That’s the only option we have got.
    Best Luck.

    • Hello Saurabh! I am glad to hear you are doing better after your surgery, that is unfortuneate that you had to get it done in the first place though! I am not familiar with Pranayam, but I think I will definitely check it out, thanks for the tip 🙂 Thank you very much, best of luck to you as well!

  9. Hi- I too am fearful of the biologics and always bring up prednisone which docs seem to hate. I am going to friend request you on FB.. kristin anderson

  10. Thank you for sharing your story, and good luck with finishing up school and applying to grad school. I really like your positivity!

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