About Me

My story begins where many medical journeys do: with not being believed. I suffered a mental breakdown, followed by persistent anxiety and panic attacks. As my breathing problems worsened, three different hospitals told me it was “just anxiety.” But deep down, I knew something more was happening.

It wasn’t until a 10-day hospital stay that someone finally listened. I was diagnosed with COPD-Asthma Overlap Syndrome — and everything changed. Soon after, I was also diagnosed with Alpha-1 Antitrypsin Deficiency (A1AD), a rare and serious genetic disorder that affects the lungs.

My health deteriorated rapidly. I was admitted to hospital through resus 22 times in just eight months and experienced type 2 respiratory failure multiple times. On at least three occasions, my family was told I likely wouldn’t survive. But my body fought hard.

A consultant informed me that while I needed a lung transplant, I was far too frail to survive one. At that point, I was skeletal. I agreed to overnight tube feeding, receiving 1,500 calories while I slept for eight months to regain enough strength to even be considered for the transplant list.

Then, a breakthrough: a board of specialists approved me for a rare treatment — an injection every eight weeks to manage my extremely severe asthma. Since starting this treatment, I haven’t had another respiratory failure.

Even now, my journey is ongoing. Each transplant review seems to bring a new diagnosis. But I’ve learned to face these challenges with determination, patience, and support.

This blog and website are here to share what it’s really like living with multiple, complex, rare illnesses. I want to raise awareness, give a voice to those who may feel unheard, and provide updates on treatments and research when available.

Thank you for being here. I hope you find encouragement, information, and a sense of solidarity in these pages.