June 2019

‘Hi, I’m Harriet, 26, and I met Zoë through having Lymphangioleiomyomatosis (LAM). To rewind, I was first diagnosed with angiomyolipomas (kidney tumours) when I was 17, with no prior issues with my health. I had no idea what it meant and it was completely terrifying to go through this experience as a teenager. To make things worse, I had to go to the doctors EIGHT times before anyone would refer me for a kidney scan, bearing in mind I was suffering from flank pain and acid reflux. Many doctors told me I was a teenage girl with stress and anxiety, claimed I was gluten intolerant and also blamed it on my periods; one doctor even said ‘I’ll eat my hat if there’s anything wrong with you’. It was an extremely stressful time in my life. After I had the angiomyolipoma diagnosis, I had an embolization in the summer and suffered no more issues for a very long time. Seven years later, I suffered a severe pain in my shoulder and breathlessness, and after being admitted to A & E, I was confirmed to have had a pneumothorax (lung collapse). This required a chest drain with subsequent surgery to prevent the lung from collapsing again. After noticing cysts on the CT scan, doctors believed it was LAM, and referred me to Nottingham, where I was later confirmed to have sporadic LAM.

Thankfully, I was introduced to LAM Action immediately, and only four weeks after my surgery, I went to the LAM conference in Watford in 2019. This is where I met Zoë. Zoë was one of the only women there who had LAM who was also my age. I immediately noticed what a calm and gentle person she was, and I was drawn towards her as I felt comfortable around her. I was very anxious about the things I may have heard on that day, as I hadn’t done any prior research about LAM, even though I was just diagnosed. Even though Zoë also had TSC, we had very similar experiences, being the angiomyolipomas and the pneumothorax in our young adult lives. Zoë made me feel reassured that although we were very unique, being diagnosed with such a rare disease, that it was not all doom and gloom, and we must make the most of what we are able to do. 

Before meeting Zoë, I was truly scared that I would not be able to go back to ‘normal’. I was always very sporty and active, and lived life to the full. After the conference and meeting Zoë, my confidence slowly began to build, and my recovery was made a lot easier due to the positive influences I received on that day. Shortly after, the COVID pandemic hit and we were unfortunately unable to resume any LAM meetings, with most of us required to shield. Thanks to Zoë, a young person’s virtual meeting was set up in order to provide support to those with LAM. This meeting was very successful, reminding us that we were not alone in our journey with LAM, and it was so good to hear that we were all there to support each other, with those truly understanding what we’ve all been through. It was so great to hear Zoë was so excited and driven to write her story, and I am looking forward to reading her book. She was always so kind, thoughtful, positive and there are so many more lovely things I could say about her. I was so sad to hear of her sudden passing and it has been hard losing somebody I have shared so much in common with, especially being so extremely rare. I know she will be truly thrilled that her book has been published.

I would say to anybody newly diagnosed with this condition to not believe everything you read online, and try to only look at reliable and recent information. There has been a substantial improvement in the way LAM is managed and understood. I would also encourage everyone to believe in themselves, I truly think keeping positive is so important in the way we deal with things and seek support if you ever need it. I know we have our bad days, our struggles and sometimes things feel so frightening and unbearable. But these days don’t last forever. I have achieved a lot more than I ever thought since I was diagnosed. I stay active, going outdoors and enjoying the fresh air. I also go to the gym and I am training for a 10km Wolf Run (https://thewolfrun.com) this July. Having LAM is scary and daunting, but I can assure you the good days outweigh the bad. Always surround yourself with positive people, and just keep taking a few more steps everyday. We are all in this together, and we must always support each other. 

To Zoë,

I am so glad that I had the honour to meet you and to receive your positive influence. You achieved so much in your life despite all the challenges you faced and I can’t wait to read your book. I am so grateful for your contributions to LAM Action and the LAM community.

Harriet