East Grinstead woman receiving palliative care, speaks out on the dangers of living with damp

Sarah Webster, 45, has Chronic Hypersensitivity Pneumonitis, a rare form of lung disease believed to have been caused by a severe reaction to mould and damp in the flat where she was living at the time.

Sarah was initially diagnosed with asthma but her breathing deteriorated and by 2017 she was struggling to breathe when she was doing anything. The Royal Brompton Hospital in London confirmed her diagnosis.

Sarah says: “The moment the consultant at The Brompton saw me she knew it wasn’t asthma. Instead, I was diagnosed with Chronic Hypersensitivity Pneumonitis, a form of lung disease that I now know can be caused by a severe reaction to mould and damp in the flat where I was living. I was just 40 years old, and it was life changing news.

“I didn’t respond well to treatment at first and the hospital told me that I might only have a year left of my life. Thankfully I was put on chemotherapy, and it turned my life around. My lung capacity increased from 24% to 40%.

“Being sick is a full-time job. It is so hard – fitting in my appointments, managing my tiredness, my pain and my oxygen. But I just have to make the best of it. I am determined to help others through my illness and raise awareness of the dangers of damp.

“Not everyone living with damp will end up with my condition, but you don’t know how susceptible you are until it’s too late. When I moved into my flat in 2007 it had one small square of damp in my wardrobe. I painted over it, but it kept coming back. Then a leak in the roof of the building caused damp to come through my wallpaper.

“No one knows how their body is going to react, but I am determined to make more people aware of the dangers of living in a damp property. Mould is not healthy, even if it is a small area. Air flow is so important, and I urge everyone to open their windows and ventilate their rooms regularly to keep their homes fresh and dry. Don’t ignore signs of damp and leave it untreated because you don’t know how your body is going to react – I'm the living proof of that.”

Since receiving her diagnosis, Sarah has had to give up work and has been supported by St Catherine’s Hospice in Crawley, which provides palliative and end of life care to terminally ill people and their families across West Sussex and East Surrey.

Sarah says: “The hospice has been great. When I was first referred to St Catherine’s a lovely nurse came out to see me at home and reassured me that palliative care did not just mean end of life care.

“After that first visit, I had lots of contact with the hospice – they called me once a month and they helped to get my morphine levels correct to help my breathing so that I could keep moving – because staying active is so important for someone with my condition. I try to walk between 6,000-10,000 steps three to four times a week so I can keep moving and walk my two beloved sausage dogs.

“Before lockdown, the hospice also provided me with acupuncture, and the doctors helped me with pain management when it gets really bad.

“I now see the Therapy Team, who help me build up my strength and control the pain through stretches and exercise. They support me and motivate me to keep going with my exercises and put myself first so that I can keep active.

“I need to be on oxygen all the time when I am moving around and I often feel judged by people who assume I must have been a heavy smoker. But I’ve never smoked, I don’t drink and I’m a vegetarian!

“I would love to be healthy but this is the hand I’ve been dealt. If I can help just one person to know the dangers of living with damp and mould, then I’ll be pleased!

“I would also love to raise some money for St Catherine’s after all the help and support the hospice has given me. I’ve set up a GoFundMe page for St Catherine’s and anything anyone can donate will be a bonus and will help the hospice to support more people like me.

“It has now been five years since I first was diagnosed and I have been told the average life expectancy for someone with my condition is between four and eight years - but I’m determined to beat that!”

For more information on Chronic Hypersensitivity Pneumonitis visit lung.org and to make a donation to St Catherine’s from Sarah’s GoFundMe page please visit: gofundme.com/f/2r9gy?member=26004367&utm_campaign=p_cp+share-sheet&utm_content=undefined&utm_medium=copy_link_all&utm_source=customer&utm_term=undefined