Sarah’s story- keeping positive with Cowden’s syndrome

"In some ways, it felt like watching a car crash in slow motion."

“Cowden’s syndrome is such a rare condition that quite often people don’t actually join the dots together until quite far down the line. I was diagnosed because of what happened to my mum. You honestly couldn’t write this story.

She went into the attic to get my sister’s birthday decorations. And we had a wobbly ladder. So, she fell and ended up with a big bruise on her arm. She went to the doctor and thought, “I’ll get this bruise seen too, and whilst I’m there I’ll ask about the headaches that I’ve had for months.”

The doctor told her it was a benign brain tumour, and she had surgery and she recovered. But they ended up testing the tumour to see what it was, and she ended up getting a phone call later on to say, “you’ve got Cowden’s syndrome.” As part of that she was tested and given regular cancer screenings, falling in with the recommendations. Not long after that, she found out that she had breast cancer and endometrial cancer very close together. She did quite well for a wee while, but things returned, and she passed away.

We all got tested because of my mum, and I was diagnosed quite young. I think what
helped me was that my mum was always so positive, she was somebody that could
just have a laugh. She would say “right now it’s not great, but we’ve just got to get on
with it, and do the best we can.” I saw her go through so much, and in some ways, it
felt like watching a car crash in slow motion. You see her going through all of that
and you think, “oh no, that could be me one day.” At the same time, you see her go
through that and still have the strength of character, and say, “I’ll go and do the
things that I enjoy” and I would much rather be like that than feel like I couldn’t leave
my bed.”

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