Claire standing with hands on hips, wearing a blue dress and compression sleeve on her right arm.

Meet Claire

Claire won’t let lymphedema hold her down

Claire has had lymphedema since birth. At the time, doctors were puzzled by the swelling in her legs, leading to a misdiagnosis of clubfoot. Now a 49-year-old mother and successful business owner, Claire talks about how she confronted her condition and learned how to keep on fighting. Read her story below. *

* This is a personal report of the patient and does not necessarily reflect the views of JOBST or the current state of science. Always seek advice from a Healthcare Professional if you experience any symptoms.

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“You don’t have to hide”

Claire has been living with primary lymphedema since childhood, and her condition worsened after the birth of her first daughter. Despite an initial misdiagnosis and unsuccessful liposuction, Claire refused to let the isolation get the best of her. Today, she manages her condition with compression garments and wants to raise awareness about lymphedema. At a medical conference, she used water bottles to demonstrate the extra weight she carries on a daily basis, hoping to raise interest and inspire others in the community. “I want to get other people to feel like they don't have to hide – it's nothing that’s shameful, not at all.”

“Everyone has their little niche, mine is lymphedema.”

Claire, what’s your condition and how did you get a diagnosis?

“I have primary lymphedema, which I've had since I was born. [...] But when I fell pregnant with my eldest daughter, that's when most of the swelling came along. [...] I did have some liposuction at the age of about 30, which didn't work. [...] Nobody really knew. Nobody treated me. [...] And then I got treatment because they put me onto Professor Dr. K. and I got his help.”

How does it impact your everyday life?

“So there's three two-liter bottles of water that you have to be carrying around like in a plastic bag on your leg. [...] It can be very limiting, very alone… constantly feeling that you can't fit in. [...] But as I've got older, I've kind of banished those things. [...] Everyone's different. Everyone has their little niche – mine is lymphedema.”

What do you think about compression garments?

“If I didn't have the hosiery, I'd probably be housebound by now. [...] I get kind of a tingling sensation when I've not got it on and I'm doing something. I can feel the tingling coming on as if it's telling me that you need your hosiery on. It's like a sixth sense, I suppose. But you need it on. It's doing you good.”

How was the synchronized swimming?

“I think it's pushing yourself, because I probably would never have ever done it, although I'd go swimming. But you think, ‘that sounds great!’ and you're doing it with somebody else that is also in your situation, that you've got nothing to hide from. [...] I'm really, really amazed – really pleased with everybody. They've done ever so well, ever so well.”

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