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

šŸš Come with me to London for my Respiratory Appointment 🫁

These kinds of days are usually a VERY early start and a very long, exhausting day! 😓Mum or my partner Ben usually comes with me, and my Dad used to come along a lot too. ā¤ļø But this time, it was just me and Mum. My appointment was at 9am in London, so we caught […]

You’ve Got to Be Kidding?

As I’ve explained on previous pages, I have had a chylothorax in my right lung. This is where a fatty fluid called chyle enters the chest cavity, in my case through small perforations in my thoracic duct. How those perforations appeared, who knows? It took my local hospital a long time to work out what […]

How I Got My Diagnosis of Migraines and Micro-Hemorrhages

One of the questions I get asked quite often is: How did I get my diagnosis of migraines and micro-haemorrhages? The answer is, unfortunately, that it took years. Living with headaches every day For years, I suffered with headaches. I would wake up with a headache, take some pain relief, and then, several hours later, […]

Life Has Been… A Lot!

I’ve never been someone who sits and dwells on things. I’ve always been a “pick yourself up and get on with it” kind of girl. But this year? This year has been a lot. Ben and I started the year by spending a few days in Shropshire to celebrate the New Year. We decided to […]

Endometriosis Testing

As I write this, I’m currently waiting on a long list of results, referrals, and upcoming appointments. I’ve never been someone who lets my health get the better of me, and I don’t dwell on things—because, let’s be honest, what does that really achieve? It gets you nowhere. I’ve suffered with heavy, painful periods for […]

Living with the Physical Aspects of Noonan Syndrome

Having the genetic condition Noonan Syndrome (NS) presents a wide range of challenges, particularly on the medical front. Over the years, I’ve experienced many of the health complications commonly associated with NS. However, I’ve been fortunate when it comes to physical features—many of the more visible traits are either subtle or have changed over time. […]

What is Noonan Syndrome / RASopathy?

One of the most common questions I’m asked—by both medical professionals and people outside the healthcare field—is: What is Noonan Syndrome? Noonan Syndrome (NS) is a genetic condition classified as a RASopathy, a group of disorders caused by mutations in genes that are part of the RAS/MAPK pathway, which controls cell growth and development. These […]

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, […]

Bullying and School Life: My Personal Journey

Growing up, I loved nursery and my first school, Reaburn Juniors. It was a warm, welcoming environment where I felt happy and safe. However, the transition to secondary school—Orwell—was more challenging. While the bullying there wasn’t extreme, I did experience teasing from older students. They would laugh at me, make comments, and although it was […]