WELCOME!
Hi! Welcome to Pectus Community! My name is Jack, and I live in Boca Raton, Florida. I am 17 yrs. old, and discovered I had pectus excavatum at the age of 13. I had the Nuss Procedure done on June 3, 2022 by Dr. Dawn Jaroszewski at the Mayo Clinic in Phoenix, AZ.
How It All Started
My pectus journey began around the time I was 12-13 years old. I am a tennis player, and played on my school’s tennis team. It seemed like it came on suddenly, but I began to have trouble on the tennis court. When playing, I had difficulty catching my breath, I felt faint and dizzy, nauseous, and had chest pain. I even got winded walking up the two flights of stairs to my bedroom. One day, at the age of 14, my parents saw my chest and gasped…They immediately connected the dots and knew I had pectus excavatum.
The strange thing is that neither my parents, nor I even noticed my chest was “sinking” until around a year and a half after my symptoms started (you can read more about my story on my BLOG). Although, when my mom looks back at old baby videos of me, she swears she can now see a slight dip in the middle of my chest. She then went into full research mode, trying to figure out the next steps toward treatment.
Our first consult was with a local thoracic surgeon at Joe DiMaggio Children’s Hospital near our home. She only had pectus consults one day a month, and did not seem very experienced at performing the Nuss procedure. My mom turned to the Internet and spent hours researching pectus. However, the sites she found were were vague, confusing and only contained generic information in a few short paragraphs. The hospital sites did not offer much information either, and did not answer the questions we had.
Pectus Community is Born
So why start a new website dedicated to pectus disorders? Well, the idea came about a year before my surgery. My whole family gave up searching the Internet. I was hoping to find information from other patients who have already had surgery, but couldn’t find anything. My mom then turned to Facebook to look for any groups dedicated to those dealing with pectus. She was so excited to find a couple of great pectus groups on Facebook (see link section). We met some other wonderful families through the group, and got some great advice. However, many teens and adults (including my dad and me) do not have a Facebook account. My dad and I had no way to connect with others, yet we too wanted to read about other kids around my age who had pectus, and read about their surgery experience. Another problem my mom had with Facebook, is that she could never find where she posted her question, because it got buried under newer content.
I decided to start Pectus Community to allow people first diagnosed with pectus a place to easily find answers to their questions. My hope is that my blog will also help inspire other teens to feel better about having surgery. It will be great to have an entire community of pectus warriors connected to one another to share stories and have answers to questions readily available. My hope is that we can work together to make this site easy to navigate and find useful information. We would love to include your stories, photos and help us add to our FAQ section.
Will You Help Us?
This site will be updated frequently. PLEASE feel free to email us any questions at contact@pectuscommunity.com We are looking for other Pectus Warriors to share your pectus journey with us. You can write a guest blog post, or send us your BEFORE/AFTER photos. Go to the BEFORE/AFTER tab to download the release form and read the instructions. Pectus Community is also always adding to our list of FAQ. Contact us to have your questions added to our FAQ page. Together we are PECTUS STRONG!