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Jill’s Story (Retinitis Pigmentosa)

jills-story-retinitis-pigmentosaThough I was born with a genetic disorder, Retinitis Pigmentosa, I was not officially diagnosed until I was 26 years old.

Married and enjoying the recent miracle of our second child, but my life as I knew it was turning upside down. “Jill, you are going blind. I am sorry,” a very cold-hearted retinal specialist explained, “and there is no cure so there is nothing more I can do for you”.

Fast forward almost two decades of suffering vision loss, dealing with new social anxieties, losing my driver’s license, failing a research subject at a local university, and a career slowly but surely slipping out of sight.

My daily life is a challenge that I never saw coming; challenges that test who I am yet make who I am better. The never-ending love and support from my family and dear friends are the closest thing to a cure I have at this point. These people are the only cure I’ve got and for that, I am truly grateful.

Submitted 07/16/2019

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.


  1. Amie Van Amberg

    You are a warrior, dear Jill! Love you much! 😘❤️

  2. Emily Hildebrant

    Jill, you are an amazing woman. You face these challenges head on, and do it with a brave smile. I really admire you!

  3. Laurie

    Jill, you are someone I aspire to be! I understand struggling with a birth defect and social anxiety. It sucks! It is so hard to be strong though the adversaries but you are so strong and know that you are so loved! ♡

  4. Kim Willacker

    Jill! You are amazing! Even in your trials you think of others, keep a sense of humor and cheer others on to reach their goals. You have been a blessing in my life and my family’s. I love you my brave friend!!

  5. Amy

    You, my dear friend have my never ending support! I am grateful for our friendship and admire YOU! xx

    • Paula A Martin

      You my sweet friend touch so many lives with your strength, courage and humor. You are indeed doing God’s work in this world. So blessed to call you my friend!

    • Mellissa Beda

      Your school family is rooting for you, Jill! You are so very brave and determined!

  6. Sharon

    You are an amazing woman and am blessed to call you my friend. I hope you realize how much you are admired by everyone who knows you…Hugs, dear friend 💕

  7. Steve branderhorst

    God bless you jill
    We go way back
    All our years of Christian schooling
    Church prepared us to deal with all types of situations
    And you are a true warrior
    Keep up the good fight
    If you need anything don’t hesitate to ask
    God bless you

  8. Ronda

    Jill, you are such a strong person! What a great example you are to so many!!! We think the world of you and are blessed to be your friend!!!

  9. Donna

    You are a remarkable lady, Jill. Your perseverance is admired by so many as you fight this battle. Please know you are loved as you meet your daily struggles head on. Prayers and many hugs, friend.

  10. Carrie

    Jill you are an amazing and strong woman. I have so much respect for you. You are always fighting a battle from within but you ALWAYS give your full heart and smile to everyone you come in contact with. I am blessed to have you in my life and my circle of friends. Love you girlfriend!

  11. Bobbi Oldenburg

    I am so happy to hear you have an avenue to continue to grow … you have shown and will to continue to show all the growth and talents that you have. Keep the good fight going even on the days when the fight is hard. Much love to you.

    • Christine

      Sending you love, you truly are an amazing woman.

  12. Mandy

    Jill, you are an amazing woman and someone who inspires me! Your willingness to share your journey and your fortitude is something to behold!

  13. Misty

    Hi Jill I am newly diagnosed with ushers syndrome and retina pigmatosa…when u first learned u had this ..did I come on fast or going to b 50 n three weeks ..I’m also deaf with implants…would love to hear back from u if possible.

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