Living with lymphoedema
The tiny bump on her foot at first appeared to be an insect bite. Months later, Richelene Woolridge’s left leg had grown three times in size and she knew she had a problem.
John Stubbs, the late doctor, gave it a name, lymphoedema, and warned that there was no cure.
“At 15, that was devastating news,” she said. “I couldn’t wear shoes, I had no mobility, I couldn’t bend my knee enough to get on a bus.”
To make matters worse, “adults and kids were very unkind”.
At 48, hoping to make it a little easier for others dealing with the trauma, she has created the Bermuda Lymphoedema Supportive Network.
Its mission is to raise awareness of lymphoedema, ensure that people with it have access to necessary therapy and products, and provide a network for them.
“The primary cause is it comes from birth,” said Ms Woolridge, who only knows of a couple of people with lymphoedema here, but is certain there are others.
“The secondary cause is it comes from damage to the lymphatic system — by breast cancer, by removal of the lymph nodes; chemotherapy can also contribute to damage.
“I wanted to start a network because as [the incidence] of cancer grows, the rate of lymphoedema will grow.
“Not everybody’s going to be affected by lymphoedema, but I think people need to be more aware and I want to help others through it. Lymphoedema is a never-ending journey, but it’s a manageable journey.”
Her illness manifested itself after 13 years. Ms Woolridge was two when her grandmother accidentally spilt boiling water on her leg, damaging the lymph nodes.
She had a scar, but thought little of it until her leg started to swell at 15.
“It started with my foot. I’d been to Canada and my family thought I’d had an insect bite, but eventually it started to get worse.”
Dr Stubbs’s diagnosis demanded “a big adjustment” from the teenager.
“I had to adjust to the physical and the emotional part of lymphoedema. It affected me physically, psychologically and socially. There was lots of teasing and ridicule and because Bermuda is such a small community, it was even harder.
“I’ll never forget one lady who told me, ‘I would never go out of my house if my leg looked like that!’
“I couldn’t do sports, I couldn’t ride a pedal bike. I couldn’t wear pants. I couldn’t wear shoes, sneakers — nothing closed in.
“I had to wear ballet slippers to school with socks. As a teenager, I can’t explain how that makes you feel. You don’t feel normal.”
Her mother helped build her self-esteem while Ms Woolridge did her best to ease her grandmother’s guilt.
Hope came five years later with “a new debulking surgery” at Johns Hopkins Hospital. Dr Stubbs recommended she give it a try.
“He said it was the best thing for me to do,” Ms Woolridge said. “My leg had swelled to at least three times the size of my other leg and it was very hard; the skin gets very brittle.”
The operation took roughly six hours. Surgeons removed the skin from her leg, scooped out the excess fat to reduce the volume, and then put the skin back on.
“I was in hospital for six weeks but, after, it was like I had a new lease on life,” Ms Woolridge said. “I was able to wear skirts that [fell above] my knee.
“I bought some pants and some sneakers; I did everything I couldn’t do before. It made me appreciate life and mobility. People who are ‘normal’ don’t understand how grateful they should be to have that flexibility, that mobility. It was so awesome.”
Back in Bermuda she started having decongestive therapy once a month.
“There’s a lot of management required and if you don’t, you’re susceptible to cellulitis,” she said.
“Decongestive therapy decreases swelling and increases lymphatic drainage. It reduces skin fibrosis and softens the skin and gives better functionality.
“It’s done through a therapist. Thirty-four years ago there wasn’t one here, now there are three.”
In addition to that, she has to massage her lymph nodes with creams and essential oils to keep the fluid in her leg moving. She also wears a compression garment every day and uses a compression pump once or twice a week.
“It all depends on where the swelling is — whether it’s in your head, neck, breast, genitals — but you have to have drainage and compression and do management of lymphoedema,” said Ms Woolridge, whose problems are compounded by osteoarthritis in her knee.
“Without it, you will have pain and discomfort. I also exercise. I run, walk and do CrossFit, which helps me keep fluid. Keeping the weight off helps alleviate pain and pressure in the limb.
“Also, making sure what I’m putting in my body is clean, wholesome food helps the body heal and means I don’t exacerbate the lymphoedema.”
• The Bermuda Lymphoedema Supportive Network is a member of the US organisation, Lymphatic Education & Research Network. Richelene Woolridge plans to hold the Bermuda group’s first meeting in June. For more information: firstname.lastname@example.org