A family from Gateshead has opened up about what it’s like to have a nine-month-old baby who has lymphoedema and praised the support and treatment from St Oswald’s Hospice.
This International Lymphoedema Awareness Week (2nd-8th March), Karen, 29, and Kris Diamond, 36, are highlighting the incurable condition that causes swelling.
Willow’s lymphoedema is a symptom of a rare condition called Klippel-Trenaunay Weber Syndrome. Klippel-Trenaunay Weber Syndrome is a condition characterised by three main symptoms; a port-wine stain birthmark; swelling, also known as lymphoedema excessive growth of the limbs and/or bones and vascular malformations.
Although Willow was born with the symptoms of lymphoedema, which affects around 200,000 people in the UK, it wasn’t diagnosed until she was two months old. Willow was referred to St Oswald’s Hospice, a national centre of excellence for lymphoedema treatment.
Willow’s parents want to raise awareness of lymphoedema so that more people are aware of the condition that often goes undiagnosed and misdiagnosed.
Willow’s mum, Karen, said:
“When Willow was just two weeks old, we first noticed a lump in her leg; it used to burst and have fluid coming out of it. At two months old she was diagnosed with lymphoedema in both her legs and referred to St Oswald’s Hospice for treatment.
“She’s only nine months old but needs a lot of support, including bandaging and compression treatment for her legs because they are really swollen. The team at St Oswald’s has also taught us treatment techniques so we can help Willow at home, such as massage to help drain the fluid from Willow’s legs. Because Willow’s lymphatic system doesn’t work very well we have to do this twice a day otherwise her skin can be really hard and coarse.”
Karen says that knowing that she has St Oswald’s by her side makes things easier for the family. She continued:
“I was surprised when we were referred to St Oswald’s for this sort of support as I thought they only provided end of life care but I couldn’t have been more wrong. The care and treatment at St Oswald’s is unbelievable. From our first visit the nurses have been so lovely and they do all they can to put Willow at ease, even blowing bubbles in the treatment room! We are already seeing the benefits of treatment and we have a lot of trust in the nurses who are specialists at what they do.
“It’s so daunting to find out your daughter has an incurable condition but Willow’s lymphoedema treatment is not a scary experience at the minute, the reason simply being that we have St Oswald’s support and it’s an amazing place.”
Jill Lisle, Senior Sister at St Oswald’s, said:
“Lymphoedema is a chronic and permanent swelling which can affect any area of the body, most commonly the limbs. Despite what people may think, lymphoedema can affect people of all ages, and can be caused by faulty genes, as we have seen in Willow, or by cancer and its treatment.
“Unfortunately the condition often goes undiagnosed or misdiagnosed for some time so part of what we do at St Oswald’s is about education and recognising the symptoms of lymphoedema. If you notice unexplained swelling, please speak to your GP and if necessary ask to be referred to a specialist clinic.”
To find out more about lymphoedema and St Oswald’s Lymphoedema Service visit https://www.stoswaldsuk.org/lymphoedema-service
You can follow Willow’s journey at www.instagram.com/wonderwillow19. The family is fundraising to thank St Oswald’s and the Lymphoedema Support Network for their support. To make a donation to the Diamond family fundraising page please visit www.justgiving.com/crowdfunding/karen-cook-4