My CHM History

Picture your world through a cardboard tube that slowly collapses over time, giving you pinhole vision and, eventually, preventing you from seeing anything. For some of us, that isn’t just an imaginary exercise, it is the life we are leading.

My name is Curt and I have a rare genetic retinal degenerative disease called Choroideremia Β (CHM), which is pronounced Kuh-roid-er-emia. For more details about CHM go to curechm.org. To oversimplify CHM it generally causes night blindness in teens, followed by tunnel vision in your twenties, legal blindness in your thirties and potential functional blindness in your fifties or sixties. After multiple people in my family recommended writing a blog, I decided they were correct.

In 1989 (I was 8), I was diagnosed with CHM by Dr. Sieving at the University of Michigan. This is interesting, as he is now the director of the National Eye Institute. Every other doctor I have seen (which Β is a lot) looks at the diagnosis of CHM to see Dr. Sieving’s name and pretty much say that he is correct before even looking at my eyes.

Throughout elementary and middle school I never really thought about my vision. There were only minor difficulties that I had with being in dark rooms and outside at night. The majority of people probably thought I was just clumsy when it was dark.

In high school I started to recognize the difficulties that I would have in life. In marching band we were always told to use our peripheral vision, which I was unable to do. My parents tried to help and set me up to have mobility training (walking with a cane) and were even looking into me learning braille. This posed too much for me to accept, and I quit. At this point, I never wanted to think about my vision again. I even blamed my mom for my vision at one point telling her it was her fault, even though there was no way for her to know she carried the defective gene. This was completely out of anger and never what I truly believed.

I chose to go to Michigan Technological University (MTU) for college and got a B.S. in Mechanical Engineering Technology. As an Engineer, typing a blog is pretty much the most painful thing I can think of. I once heard a comment from an Engineer that I always liked “I Engineer, me no English good.” Hopefully, your reading experience is less painful than my typing experience for the post.

During college I wanted to prove that I did not have any disabilities. In retrospect this was probably not the smartest thing for me to do. Even with impaired vision I thought why not go rock climbing, ice climbing, cliff diving, scuba diving, off-roading, downhill skiing, mountain biking, etc. I even had a job with MTU where I worked security at night locking up all the buildings on campus. What could go wrong with someone who is night blind wandering back and forth across campus at night?

Night time driving was always an issue for me. I never drove long distances at night. I always lived less than 3-4 miles from where I worked and would still drive to work at night. This came to an end in the fall of 2012. When I turned left around a corner out of my subdivision, I went wide where my front tire went off the road where there was almost a vertical drop off of about 4 feet. I nearly rolled my truck while going about 5 MPH. That is when I decided that it was a stupid idea for me to still be driving at night.

It was in July of 2013 that I decided to stop driving. This was difficult for me, not because of independence reasons like you would think. It was difficult because I like cars and trucks. I have a minor Jeep obsession and now have no reason to ever own another Jeep (I have owned 2 in the past). To this day I still own my truck that I bought brand new in 2004 and I am not really sure why I still own it. My wife drives it for me every once in a while, but it is very inconvenient to load a toddler and an infant into the back seat of a truck. For the most part it just sits in the garage reminding me every day that I can’t drive it.

In October of 2013 I was declared legally blind by my doctor. This was not a shock to me, as I knew I was having a lot of vision issues. My doctor told me to contact the local government office for the blind. I had a representative come to the house, and I was pretty much told that I am the most functional blind person that she had ever talked to. She asked me what I need help with, and that is the point I realized being blind with tunnel vision is probably the best version of being blind that exists. Don’t get me wrong, it is extremely difficult to have your vision slowly taken from you but there are a whole lot worse diseases that take away your acuity and ability to do everyday things a lot sooner in life than CHM.

I currently work as a Maintenance Manager in the automotive industry. My main focus is on software projects that keep me in front of a computer for the most part. This is probably a good thing, because I am getting to the point where I probably do not need to be out on a manufacturing floor with forklifts moving around. If my condition continues to get worse, there will be a point in the future where I will need to make the decision to move to an office-only job. When this day comes, this will probably be more difficult for me than stopping driving.

But I have never let difficulties stand in the way until the last possible minute. So as difficult as it is for me to write this blog, I hope it helps bring awareness and understanding to a disease that nearly everyone I meet admits they have never heard of until that moment. My journey with CHM began when I was 8. Through this blog, I’m inviting you to join me now as my journey continues through possible treatment and a future no one can see, whether they have CHM or not.

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13 thoughts on “My CHM History

  1. My name is Sebastien, I am french and I am living with CHM as well. I didn t have been declared blind yet, but at 36 years old, I don t think I still have that much time. Life is not easy for us and people like us. I am very happy for you, it s such a incredible chance and I wish with all of my heart u re gona recover a lil. Because just a lil, it s a gift.
    In France, it s not legally permit to do clinicals trial on human without to pass first by expencieve trials on animals, money that we don t have yet. Then the project is in stand by. The profesor Hamel of Montpellier, France Choroideremie and AEAC are looking for money that will save sights, maybe in few years.

    I wish you the best luck of the world, I understand you so much..

    Liked by 1 person

    • Curt….. I am moved beyond words! You are an amazing young man and an inspiration to me! Consider yourself hugged! God is good…. Prayers going up!!!
      Love, love, love you and yours!

      Liked by 1 person

  2. Curt…our whole family is thrilled for you, knowing this could be a turning point in your life..knowing you since you were a baby you and Alan have always been determined to get what you could out of life and the prayers coming your way are many so we all feel God is going to get you through this just like he’s had a Guardian Angel on you to do things most people in your circumstances would never think of trying. You definitely are determined and not about to give up. So with this being said just know we are all praying for everything to work out and to keep you steady, confident and healthy to get through the next few weeks. We all love you and are all sending all the best you, Janelle, William and Amelia. Peterman’s, Bittner’s, & Brumbaugh’s.

    Liked by 1 person

  3. Curt,
    My name is Rachel and I have two out three sons affected with CHM. My oldest Jacob is 11 and my youngest boy is 6. Your story truly brought tears to my eyes and touched my heart in ways I can’t even describe. Your perseverance and grace really have me in complete awe of you and your strength. My father Tom is 62 and now entering in the final stage of CHM and you really remind me of my Dad’s courage and grace. Congratulations on getting accepted on the Gene therapy trials. You are truly paving the way for my boys and their bright future thanks to this therapy and men like you willing to be the first! I will keep you in my prayers and I just know this will be a success for you! With God all great things are possible.

    Thank you from the Adams Family!

    Liked by 1 person

  4. thank you so much for this, Curt! And thank you for your courage to be in the trial. We’ll be hanging on your every word. I’m a CHM mom of a 16-yr old son with it.

    Like

  5. Dear Curt ,Janelle & Family… God’s strength, love and faith will see you through he has brought you this far and together you will overcome this challenge and continue on your journey. As you know “YOU” are much stronger than it is . Believe and never stop believing because you have all the love and prayers from us and everyone else. Know that we care and are thinking of you and your family! As my ” Precious Momma” would always say… “Take Good Care” , Our Thoughts, Love and Prayer’s… Jolene, Lee, Derek, Brian, Melissa and Families

    Liked by 1 person

  6. Curt, your blog was very heartfelt. I have known you since you were a little boy but after reading your blog it really put into perspective what you are living with. I thank you for taking the courage to write. Writing what is in your heart and mind can be very therapeutic. I will keep you in prayer. When prayers go up blessings come down.

    Surae Sangster

    Liked by 1 person

  7. Gods blessings on you and your beautiful family. You are very courageous and an inspiration to all who are facing life difficulties. I will be following your progress with great anticipation.

    Ione Berg

    Liked by 1 person

  8. Good luck to my chm friend I haven’t met yet,,,, we’re all rooting for you here in Ireland. Go and get em tiger …. errrr. πŸ˜†πŸ˜‰πŸ˜‰πŸ˜‰πŸ˜Š

    Liked by 1 person

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