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Dealing with an invisible disease that is hard to explain

maura-and-paige-montour

Paige, right, and her friend Maura prepare for a pep rally

I’ve had a very busy start of the school year. The best part about starting 8th grade this year is performing with the drill team at the football games on Friday night. Our school is 3-0 so far. We had a pep rally recently where I performed with my team. We are praying for another win at next the game.

This year I joined band front as a drill team member. I attended band camp for the first time this summer in preparation, and it was a blast! I have developed some great friendships. In the spring, I plan on joining the softball team.

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Paige and her friend Olivia at the Pittsburgh Walk for PKD

PKD has impacted my life at school in both a positive and a negative way. I’ve lost some friendships because of it, mainly because some of my peers think I am seeking attention because I don’t look sick. They don’t see or feel how I feel on the inside. The fatigue is difficult some days. The positive is that I know who my friends truly are. They are there to support me on the not so good days. My friend Olivia is always there for me. She joined me and my family at the Pittsburgh Walk for PKD on Saturday, September 17th. I was thankful she came and walked with me for my cause.

I’ve also experienced negativity from some teachers, but we have addressed it at school. My mom and I even experienced it with the school nurse. She told my mom that I was trying to get out of class with my visits to her and bathroom breaks. My mom had to explain my condition and its effects on my body.

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Paige and her mom, Wendy, at the Pittsburgh Walk for PKD

It’s all about educating the public. Even adults don’t understand sometimes. Once they understand what PKD is, they are supportive. It is frustrating at times though. My coaches are always understanding about my disease. I explain it, and they tell me to come see them if I need anything.

I want people at my school to know that I am not faking; my illness is real, I am not lying. The pain and fatigue are real! I would like to educate them on PKD by showing them what my kidneys look like on the inside and explaining to them how this disease affects the rest of my body, too.

How do you educate others about PKD?

bandPaige is 13 years old and lives in Pittsburgh, PA. She is active in sports at her school, and is a member of the drill team. In past years, she has also been a member of the wrestling, volleyball and softball teams at her school.

Comments

  1. Maureen Gardner says:

    Thank you for sharing your story Paige! My daughter and I can definitely relate to your story. She was diagnosed at age 16 but had symptoms for years before.
    My goal besides supporting her in every way every day has been awareness. Like you said it is so often an invisible disease.
    I have been the Walk Coordinator for Western NY the past 2 years and we are so grateful to be involved and support the foundation!

    1. Wendy Trischler says:

      The foundation is a wonderful support system. We are very lucky to have such a great group from The Pittsburgh Chapter to give us the support we need.

      Good luck to you and your daughter!

  2. Nancy Kaminski, Pgh. Volunteer Walk Coordinator says:

    We (Pittsburgh Chapter) are soooo proud of our newest and youngest volunteer – great job, Paige! You are making a difference in your community by bringing awareness of this invisible disease to your peers – thank you for taking the initiative to do this!

    1. Wendy Trischler says:

      Nancy,

      Thank you for your kind words. The Pittsburgh Chapter has been such a great support system for Paige and I. You all have taken Paige and welcomed her with open arms. You are a great group and we are VERY blessed to have you all in our lives!

  3. Eugenia says:

    Good job Paige. I too have PKD and some people have a problem in understanding the complicated symptoms of this disease. Your story is well written and I understand. I’m wishing you all the very best and thank you for sharing your story with me.

    1. Wendy Trischler says:

      Thank you!

  4. Wendy Trischler (Mom) says:

    Paige,

    I am so incredibly proud of you! You were faced with a tough diagnoses at a young age. Even though you have a chronic illness you are overcoming every obstacle that has presented itself in this past year. Your strength and determination is your biggest asset in your journey with PKD. I am your biggest cheerleader and will be with you every step of the way!

  5. Frances Doat says:

    Paige, you are so brave. Although I was diagnosed with PKD at age 22, I am now 69.6 years old. Last August 11th, I received a kidney transplant from a very, very young man. The transplant was easier than having my tonsils out at age 22. There is hope…the drugTolvaptan has been approved for PKD in Europe. It is being tested by Dr. Frederick Rahbari at Emory. I am not sure, but I think Dr. Arlene Chapman is testing it at The University of Chicago. You are too young for the test I think, but you need to follow their progress. Tolvaptin stops the growth of cysts.

    Whatever you do in life, do not smoke or drink alcohol and you will live a long healthy life. My love and prayer for you!

  6. Melissa Kaido says:

    I. Was diagnosed at age 32 when my son was born at twenty eight weeks. Early detection is key. I complained of fatigue and flank pain but the drs never checked my kidneys. Unfortunately I begain diysis four years ago and now look like I’m nine months pregnant. Whenever anyone asks me when I’m due I tell them three to give years. That approx waiting list for organ donation. This usually leads to more conversation and I’m very open about my condition. My family doesn’t really understand what I go through on a daily basis with the pain and fatigue however I do have a few great friends that are always there to support me. Thank god u were diagnosed early and take proper precautions to avoid dialysis. I will keep you. In my prayers.

  7. Lisa says:

    We have about the same story! I found out I had PKD first week of my senior year in high school. I had perfect attendance 9th, 10th, and 11th grade. I wanted to graduate with high school perfect attendance. PKD made it very hard for me to achieve that goal, but I did it! I checked in/out of school a lot tho. I would stay long enough to be counted for a day or check in late. Set your mind strong then you will stay strong! Live by faith not be sight! Keep pushing forward!!

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