My Story

In 2017, my world changed. 

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After a dash to the emergency department of my local hospital, countless bloods and tests, and doctors whispering behind curtains, I found out the cause of my swollen feet. 

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I had lymphangioleiomyomatosis, LAM for short. TSC-LAM, to be specific – a secondary condition to my already rare Tuberous Sclerosis. 

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Essentially, this is an interstitial lung disease and only affects 160,000 people, primarily women, worldwide. And, what made my situation even more fun (read: scary) was that my primary symptom was pleural effusions, which happens in less than 10% of TSC-LAM patients. So, understandably, not only were my doctors in the dark, so was I. 

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So, I was forced to look up and learn about my disease on my own while my doctors scrambled to do the same. Luckily, I had some academic know-how from my Biology uni days to know where to look first (hello, Google Scholar).

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But even that didn’t prepare me for the peer-reviewed publication I read giving a prognosis of 10 years. Not what you want at any age, let alone at 25. (I still remember sobbing uncontrollably in the shower afterwards)

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Luckily, although it was a recent paper, it was outdated. See, I hadn’t yet heard of the LAM Foundation: its innovative research and studies, crucial medicine, or its amazing resource of Lammies – a life-saving collection of women with lived experience, more knowledge than some doctors, and, most importantly, the reassurance that everything would be okay.

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Learning how the LAM Foundation and Lammies work together to make an actual difference and drive change made me realise how vital it is for healthcare companies and organisations to truly engage with their patients. Unfortunately, as I’ve found in my own research, a lot of these companies struggle to accurately get their points across. It’s either too clinical and cold, or it’s simplified too much that importance and meaning go out the window. 

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And that’s where I come in. I understand how to break down the complex into the clear and the passion to improve patient care using my lived experience to do it.