Lymphoedema sufferers live with constantly swollen, painful limbs. Nicola Conville meets four people fighting back.
Four inspiring people tell how they overcome their debilitating disease to live fulfilling lives.
“I box, run and swim … my body doesn’t hold me back”
Ellie McMillan, 24.
“I have primary [inherited] lymphoedema. The first symptoms occurred when I was 13 and developed a very swollen right ankle. I went back and forth to lots of different doctors but it took seven years before it was correctly diagnosed. At that stage it had passed to my left leg.
“I wear compression garments and have manual lymphatic drainage. I also go to the gym, do a lot of boxing and weight classes, run, swim and do Pilates. I listen to my body and see what it needs. It doesn’t hold me back from too much.
“It’s hard being young and not being able to wear the clothes or shoes I like. The compression garments are not the nicest things to wear but you have to take it all in your stride. My family have been supportive and bring me to all my appointments.
“If I’m out with friends and my legs feel heavy or sore I have to leave. But I decided a long time ago that I wasn’t going to bow down to my illness. Next month, I am going to Europe with friends. I can’t wait.”
“I don’t let my disease get in the way of me doing the things I love”
Andrew Gedden, 49.
“When I was 39, I was diagnosed with a form of melanoma. The lymphoedema was not entirely unexpected given the nature of the surgery I had to have for it. In 2005 I had a hindquarter amputation, which means half of the pelvis, my hip joint and leg were removed.
“Life hasn’t been without challenges. I have to wear high-compression garments for up to 24 hours at a time, elevate my leg to promote drainage and take medication when the pain gets too much.
“Having lymphoedema impacts me every day and that’s predominantly to do with mobility. Squatting or kneeling to do simple things like home maintenance or gardening is almost unbearable.
“I’ve never tried to let the disease or cancer impact on my life. I’ve just re-engineered the way I do things. In the past few years I’ve had trips to Europe and the US. I don’t let my disease get in the way of me doing the things I love. While it’s hard to get around, I live a full life.”
“As a teacher I have to be a positive role model for my students”
Megan Southwell, 41.
“I was diagnosed with breast cancer in March 2007, when I had just turned 36. I had a lumpectomy and then had to get the lymph nodes removed, followed by chemotherapy and radiotherapy. I developed lymphoedema in my right arm before my medical treatment was over.
“I’m accepting of my condition but I hate wearing the compression garment, which goes from my shoulder to the first knuckle of my fingers. Luckily I only have to wear it for 12 hours a day.
“Simple activities like shopping are hard. Trying to find jackets that fit is difficult, for example. I love straightening my hair but I can’t keep my arm up for long enough to be able to do it myself because it is so heavy. It’s also hard to write on the blackboard at work, but I just get on with it.
“I am a PE teacher so I have to be a good role model for students. Some of them have parents who are sick and I need them to see that if you have the right frame of mind, life can keep going.”
“I wear stockings so I can be healthy like everyone else”
Dallas Lilley, 8.
Louise Lilley, Dallas’s mum, tells his story:
“Dallas was diagnosed with lymphoedema at nine months. The condition was in his left leg and he wore a knee-high stocking until the age of two. From the age of three, he had to wear a full body suit that goes from his toes to his chest. He takes it off at night and occasionally we just bandage to the knee to help the swelling.
“Dallas sleeps with a wedge at the end of his bed to keep his feet higher than the rest of his body and gets massages, as well as having salt baths and regular moisturising to help his skin. He also needs to drink up to one and a half litres of fluids a day.
“He can’t bend his legs and he gets tired on long walks, so we take a wheelchair. His school is supportive and he has friends there who have known him since kindy.
“Dallas has the same hopes and dreams as everyone else. He has developed other skills to cope with the restrictions and would like to be a policeman or a soccer player when he grows up.”