"If you can't breathe, nothing else matters"

Skiing

Life certainly is full of adventures and challenges at times.

Fourteen years ago I got the news that I had a very rare lung disease called Lymphangioleiomyomatosis (or LAM for short). While I probably had symptoms of LAM for a couple of years, at 22 after just graduating from university, I was given the news. After googling what it was, the first thing that came up was “a fatal disease affecting women of childbearing age,” which was a massive shock. Shortly afterwards were more scans and a lung biopsy, I ended up with a referral and an appointment at the lung transplant clinic. A trial of Sirolimus was suggested to try and slow the damage to my lungs and surprisingly, it increased my lung function by a significant amount. It meant I was able to live a relatively normal life for the next few years.

Tines Have the conversation today

Have you talked about organ donation with your loved ones?

Tines
Questions & Answers

Do you still have questions, or need answers?

ASH

My name is Ashley Longstaff and I’ve recently turned thirty
one years old. I’m a technology teacher and house dean
at an all girls’ school. The job is challenging, and certainly
keeps me busy, but it’s also hugely rewarding.

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