Local family, mayor and health workers #Sockit to Lymphoedema
The Mayor, Western Trust staff and local schoolchildren have been donning odd socks this week to support a campaign launched by a Derry mother.
The ‘sock it to Lymphoedema’ campaign was formed by Cheryl Tierney, whose two children have been diagnosed with a rare form of the condition.
Seven-years-old Mary Kate and five-years-old Ben have to wear compression garments or bandages 24 hours a day to manage a build up of fluid in their legs.
Their mum came up with the idea of wearing odd socks to raise awareness of Lymphoedema when she noticed people staring at the garments her children wore.
“I wanted to educate people and thought, well I’m going to wear odd socks and you can stare at my feet instead. It was all about raising awareness of Lymphoedema because it affects one in every 6,000 children and I have two.
“It is a chronic, progressive condition. It can’t be cured and will get worse if you don’t manage it. Lymphoedema can be managed if you know how and have the support and services around you to do it.”
Mary Kate wasn’t diagnosed with Milroy’s Disease, a rare form of Lymphoedema until she was eight months old, however it was apparent when she was born that there was something wrong.
“Her legs and feet were really swollen at birth and, initially, it was assumed the umbilical cord had been wrapped around her leg. When she was a few hours old Mary Kate became really unwell and she was transferred to the Neo-Natal Intensive Care Unit.
“She was tested for everything under the sun and all the tests came back clear. We still felt lost and wanted answers because the swelling in her legs and feet wasn’t going away.”
Doctors were unsure about what was causing the swelling and eventually Cheryl turned to the internet to get some answers.
“I was so afraid to look up her symptoms, but we couldn’t go on like that. We were so traumatised and didn’t know what was going to happen to her.
“She was so sick when she was born we didn’t even know if she was going to survive.”
Cheryl discovered information about Milroy’s Disease online and realised her daughter had every symptom.
She contacted St. George’s Hospital in London, the UK centre of excellence for Lymphoedema treatment, and they advised the family to seek a referral from their doctor.
“Milroy’s is caused by a specific gene and they confirmed that Mary Kate had it.
My husband, Brian and myself donated bloodwork to a research project St. George’s were conducting and is still ongoing.
“It showed that neither Brian nor I have the gene and they couldn’t really explain how Mary Kate had got it. They suggested that sometimes it can happen spontaneously.”
The family accepted this explanation until Cheryl became pregnant again.
“We were told there was no genetic link and it was a one-off with Mary Kate and it would be a one in a million chance that our next baby would have Lymphoedema.”
However, when Ben was born his Lymphoedema was worse and went the whole way up to his waist.
“I knew to look at it, exactly what it was. By that stage we had great links with London and they confirmed Ben definitely had the same gene. They can’t explain it and it’s a bit of a mystery, but something has triggered it. They really are a rare case.”
The Western Trust established a Lymphoedema service in 2010 and the Tierney family receive support from the Trust’s Clinical Lead for the condition Jill Hamilton.
Cheryl said that Jill has been ‘absolutely amazing’ and would have her move in with the family if she could!
She is also full of praise for the way her children deal with their condition.
“It is not a condition where they have to take medication every day, it takes a lot of hours managing Lymphoedema.
“We have to do manual Lymphatic drainage at least three times a day on each child to stimulate the lymphatics they do have.
“Mary Kate and Ben are also at a high risk of infection, so their skin has to be meticulously clean and they have to wear compression garments and specially made shoes.”
Cheryl explained that these garments are ‘really tight’ and would be similar to wearing quite a few pairs of flight socks.
The children must also be wrapped in bandages at night and managing the condition can be ‘quite intense for them.’
“Exercise is also an important part of their regime, but if they over exert themselves they end up wiped out for couple of days.
They have wheelchairs and we let them decide when they need to use them. They struggle with things like stairs and climbing or even playing in the park because their wee feet are so bulky.
“We try and get on with it, it is just part of our lives.”
Cheryl said they have always been very open with Mary Kate and Ben about their condition.
“They are just amazing and nothing phases them. They know they have to do physio and wear the garments to make the condition better.”
Cheryl said the support for the sockit campaign has been amazing and has helped to raise awareness about the condition.
The Lymphoedema support Network embraced the campaign and ‘ran with it’, winning an award along the way.
Cheryl said that Derry people have been particularly supportive of the campaign.
“They are so good and really rally round. Some of the mums at St Patrick’s P.S., Pennyburn, (Mary Kate and Ben’s school) even went to the effort of making socks for their children this year. The support locally has been amazing.”
The Mayor of Derry City and Strabane District Council, Councillor John Boyle, took up the #SockIt challenge for Lymphoedema Awareness Week.
He encouraged others to take on the challenge and share photos via social media using the hashtags #lymphoedemaawareness #Sockit.
The Western Health & Social Care Trust (Western Trust) Lymphoedema Service also encouraged staff members throughout the Trust to wear odd socks.
There are currently over 1,000 patients known to the Lymphoedema Service in the Western Trust, yet it is still not a widely recognised condition.
Jill Hamilton, said awareness of the condition has improved over the last number of years and there is growing demand on the service.
She added: “Early detection and early referral to the service can lead to a better outcome for patients, in the long term, by providing the necessary skills to be able to self-manage their condition.”