A woman who developed swelling following the birth of her daughter has opened up about living with lymphoedema, an incurable condition that is controlled by regular treatment and self-management.

Lisa Willis, from Gateshead, first became aware that she had primary lymphoedema over 20 years ago when she noticed unexplained swelling after her pregnancy.

Throughout March St Oswald’s Hospice, based in Gosforth, is dispelling common misconceptions about hospice care by taking part in a national campaign called ‘Open Up’ led by palliative care charity Hospice UK. The month kicks off with Lymphoedema Awareness Week (3rd-9th March), the only national week dedicated to raising awareness of the condition.

A common myth about hospice care is that they only care for people with cancer, however St Oswald’s treats people with a range of incurable conditions, including people like Lisa whose diagnosis is not palliative.

Lisa tells us more about her condition and how it is well managed to help her have a good quality of life. She said:

“I have primary lymphoedema in both of my legs, which was brought on after being pregnant with my daughter. The first sign was the swelling, which was really bad, so I was referred to St Oswald’s by my GP. Now I’ve been coming to the Hospice every six months for about 20 years.

“At St Oswald’s outpatient clinic I get intensive bandaging treatment, which involves moisturising and wrapping my legs in bandages. This helps to reduce the swelling, but needs to be done every six months to help manage the condition.”

Talking about the service at St Oswald’s, Lisa continued:

“The staff at the Hospice are amazing, they go out of their way to make a you feel really lovely about yourself and very comfortable. You’re lit up by staff every time you come in.”

Jill Lisle, Lymphoedema Practice Development Lead at St Oswald’s said:
“Lymphoedema is a chronic and permanent swelling which can affect any area of the body, most commonly the limbs. It can affect people of all ages, and as highlighted by Lisa, it can be caused by faulty genes, or by cancer and its treatment.

“This Lymphoedema Awareness Week we are increasing awareness of the condition as unfortunately the condition often goes undiagnosed for some time. So, if you notice unexplained swelling, please speak to your GP and if necessary ask to be referred to a specialist clinic.”

To hear more from Lisa watch this short video https://youtu.be/E8HYKf09y7g

Find out more about St Oswald’s Lymphoedema Service visit https://www.stoswaldsuk.org/lymphoedema-service