THE mother of a 14-year-old boy who suffers from a condition that at one point left him on 24 tablets a day is raising awareness as part of efforts to help other families feel less alone.
Deirdre O’Neill’s son Joseph suffers from primary lymphoedema resulting in a compromised lymphatic system. This results in extreme localised swelling currently affecting his legs. The condition means he is at significantly increased risk of infections and complications including cellulitis and in severe cases, skin ulcers. Joseph said the condition most recently affected his enjoyment of sports due to the heavy feeling in his legs. However, the Dunmanway teen remains passionate about boxing and dreams of competing professionally when he grows up.
Deirdre admits life hasn’t always been easy, but the family are keen to highlight the condition during Lymphoedema Awareness Month. The initiative sees doctors, patients and advocacy groups come together to highlight the illness.
Joseph found himself on IV drips in hospital numerous times after being admitted for lymphoedema related complications. However, despite the dangers, Deirdre said many healthcare professional still lack knowledge about the condition in children.
“It’s difficult when you’re in the emergency medicine department because doctors will often ask what it is,” Deirdre said.
“At one stage after a week on an IV he was on 24 tablets a day. That meant six tablets four times a day. He’s had 17 episodes of cellulitis and he’s become very unwell with most of them.
“Our biggest fear is Sepsis. Summertime is the time for infection. Even an insect bite could set it off.”
The condition, Deirdre explained, often makes everyday activities difficult.
“It makes it harder to run because you have less energy and less motivation. He used to love soccer but it’s more difficult to run now. Like most children he was more happy go lucky when he was younger so the condition didn’t bother him.
“I think with a condition like lymphoedema you reach a stage where you realise this isn’t going away. There is a process of acceptance. Once you come to accept the condition you can take better management and adopt an improved attitude.”
Joseph refuses to allow his condition get in the way of enjoying life.
“He’s very sociable and loves people. He also has lots of friends. Joseph enjoys activities like mountain biking which leave me very nervous but I can’t wrap him up in cotton wool.”
She is keen to see the strength of children with the condition acknowledged.
“It’s a rare condition in children. Not many people realise it exists. We felt very strongly about speaking up so we can use the opportunity to shine a light on other families.
“You don’t see many children with the condition and the services available are all adult centred. We’d like to see the treatment made accessible.”
Nonetheless, she appreciates that the condition can often be equally difficult for adults.
“We know a lady in the community who also suffers from the condition so we see how debilitating it can be for older people too. If anyone wants to talk to me about it I’d be very open to that.
“When you are in a situation like this you can feel like nobody understands but there are probably more people out there affected by this than any of us even realise.
“Talking about this and having a positive attitudes normalises people’s experiences and that’s really important. If anyone going through the same thing wanted to talk to me about it I’d be very open to this.”
For more information about lymphoedema visit the HSE website.
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