Welcome to my blog, feel free to follow my journey below.

Hi, I'm Shahn!

Hi, I’m Shahn. I’m 32 years old and based in the UK. I was diagnosed with Noonan Syndrome (NS) at birth, a condition that has shaped my life in many ways. Over the years, I’ve undergone numerous operations and faced many challenges. You can learn more about my experiences in the ‘Living with Noonan Syndrome: My Journey So Far’ and Blog sections of my website.

While Noonan Syndrome has undoubtedly presented challenges, it does not define who I am. I’ve always believed in overcoming obstacles, and I continue to embrace life with resilience and a positive outlook.

This website is a platform for me to share my personal story and raise awareness about Noonan Syndrome. Through my experiences, I hope to shed light on the medical conditions, physical challenges, and other battles that come with living with NS. My goal is to help others understand the condition better and provide support to those who face similar challenges.
Thank you for taking the time to read my story. I hope that, by sharing my journey, I can make a positive impact and encourage greater understanding of Noonan Syndrome.

Pectus Excavatum/Scoliosis

For as long as I can remember, I’ve had a dip in the centre of my chest. It’s never really bothered me — it doesn’t (as far as I know) affect me medically — but it does look a little different, making the top of my breastbone appear more prominent.

After my first open-heart surgery, where my breastbone was broken to access my heart, both my parents and I assumed this was simply how my body had healed. Following my second open-heart surgery, my chest still looked exactly the same — which, to be honest, I was quite grateful for, as it hadn’t worsened.

About three years ago, I received a call from my GP surgery asking if I’d be willing to volunteer an hour of my time to help train future doctors and surgeons from universities across the UK. Of course, I agreed. I’m aware I’m a bit unique — not to sound boastful, but I’ve been told this by many specialists over the years. Having multiple health conditions, some quite rare (especially here in the UK), tends to make you stand out medically.

During the teaching session, one of the tutors mentioned to the students that I have Pectus Excavatum. That was actually the first time I had ever heard that term. Since then, I’ve noticed it appearing in my hospital records.

Although it doesn’t affect me day to day, I’ve always experienced chest pain — something no doctor has ever been able to explain. To this day, no one has formally sat me down to discuss my Pectus Excavatum or what it means. Like many of my other conditions, including Noonan Syndrome, I’ve had to learn about it myself through reliable online sources and connecting with others who have similar experiences.

Scoliosis has also been mentioned to me in the past, and more recently again. However, at the moment, there’s nothing to be concerned about — it’s considered very mild and, allegedly, painless at this stage.

Pectus Excavatum

Pectus Excavatum is a condition where the breastbone and ribs sink too far into the chest. You can read more about it on the Mayo Clinic website

https://www.mayoclinic.org/diseases-conditions/pectus-excavatum/symptoms-causes/syc-20355483

Issues with muscles and bones

https://www.mayoclinic.org/diseases-conditions/noonan-syndrome/symptoms-causes/syc-20354422

Noonan Syndrome

According to the Mayo Clinic’s page on Noonan Syndrome, some of the physical and structural issues that can occur include:

  • Pectus excavatum (sunken chest) or pectus carinatum (protruding chest)
  • A short, sometimes webbed neck
  • Abnormal curvature of the spine (scoliosis)

These are just a few examples of the many physical characteristics that can be associated with Noonan Syndrome.

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