My Story

Hi, I'm Kathleen, the creator of this website! I wanted to share a quick story about me, my experience with pectus, and why I decided to create Pectus Notebook.

I was first diagnosed in 5th grade with pectus excavatum. In the year before my diagnosis, I experienced a gradual loss of a lot of things I took for granted, like walking up stairs without getting out of breath, blowing out birthday candles, blowing up a balloon, and sitting and standing up straight without lower back pain. I also developed a permanent hunchback position, or kyphosis.

My primary care physician suspected that I had pectus, but didn't know for sure, so he referred me to an orthopedic specialist. The specialist confirmed my diagnosis, but told my family and I that no effective treatments were available. He mentioned the Nuss procedure, but told us that it was painful and ineffective.

Essentially, I was left without treatment options for a condition that left me with some pretty debilitating symptoms. By chance, around a year or so later, my family and I stumbled on physical therapy as a treatment. Dr. Katy Lyons at Back In Motion Physical Therapy combined targeted exercises with hands-on therapy, which eradicated the majority of my back pain, helped me increase my lung capacity, and allowed me to sit up straight. Physical therapy was truly an amazing treatment for me, and it allowed me to have a more normal-looking chest and an increased exercise tolerance. There's more information about physical therapy under More > Physical Therapy.

Six years later, again by chance, my mom heard about the Nuss procedure from a coworker, and we decided to travel to the Nuss Center at the Children's Hospital of the King's Daughters in Norfolk, Virginia, to learn more. I eventually decided to have the Nuss procedure because of three reasons:

1. The chance to decrease my kyphosis and have a more normal chest appearance

2. The chance at permanently eliminating my back pain

3. The possibility of increased exercise tolerance

In the end, I know that having the Nuss procedure done was the right decision. Although it hasn't entirely disappeared, my back pain has decreased, my exercise tolerance is better, and my kyphosis is almost completely gone. I'm also a lot more comfortable with how my chest looks, its appearance didn't bother me much before, but it's really nice to look like everyone else. Here's my x-ray from after the procedure!

There's more information about the Nuss procedure under the Nuss procedure tab.

Throughout this entire process, I have been lucky enough to meet the right people at the right times. From the very beginning of my journey with pectus the the very end, I have struggled to find information about my condition that is easy-to-read, compiled, and trustworthy. For this reason, I decided to create Pectus Notebook.  I named my project "Pectus Notebook" after my mom's blue notebook, where she wrote down information about pectus during every doctors appointment. Like my mom's notebook, this resource is meant to be an accessible resource for anyone with the condition, no matter the treatment path, age, or severity of the pectus. To ensure the information is accurate and trustworthy, I have:

• Cited every claim or piece of information on the website.

• Partnered with doctors at the Children's Hospital of the King's Daughters, Dr. J at Mayo Clinic, and Dr. Katy Lyons at Back In Motion Physical Therapy to verify the information.

I initially created this project for my Girl Scout Gold Award, but it has become so much more than that. Thank you to my incredible team who has helped make this possible, and good luck to you on your pectus journey! I hope this website will be able to provide you with some of the answers you're looking for.