Claire has had lymphedema since birth. At the time, no doctor had a clue what caused the swelling in her legs and she was misdiagnosed with a club foot. Now, as a 49-year-old mother and successful business owner, she talks about how she stood up to 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 knowledge of JOBST or the current state of science. Always seek advice from a Healthcare Professional if you experience any symptoms.
Claire has been living with primary lymphedema since childhood, and her condition worsened after the birth of her first daughter. Despite not receiving the right diagnosis at first and undergoing unsuccessful liposuction, she 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 even 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 is shameful. Not at all.”
If you recognize signs and symptoms similar to Claire’s, please seek advice from a Healthcare Professional to initiate the right treatment. For now, we have some helpful information available about the existing condition and their potential treatment.
“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 come 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.”
“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.”
“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.”
“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.”