What is lymphoedema? Condition Linda Nolan suffers from causes teen's leg to double in size
Watch: Teenager opens up about living with lymphoedema, a condition which has caused her leg to swell to double the size of the other
A teenager has opened up about living with lymphoedema, the same condition as Linda Nolan, which has caused one of her legs to swell to more than double the size of the other.
Didi Okoh, 19, from Chelmsford, Essex, was diagnosed with lymphoedema – a condition where excess fluid collects in tissue and causes swelling – in 2016 when she was just 13-years-old.
"It’s such a rare condition that the doctors didn’t recognise it at first," the law and criminology student explains.
“I’ve always been really into sport, so we thought my muscles were just swollen.
“But it started to spread and got more and more painful, so we knew something wasn’t right."
As a teenager, Okoh was teased for having a "tree trunk leg" and has been subjected to rude questions and hurtful comments from strangers.
She also struggled to find jeans and shorts to fit her uneven legs.
"I've always been quite a bubbly and positive person, but after my diagnosis I did struggle," she says.
“Once the swelling spread to my whole leg, and the pain got worse, I did get really upset.”
Though Okoh found it difficult growing up with the condition, as she got older she realised it was something she was going to have to live with.
"It was hard when I was around 15 as my leg was getting bigger and I was self-conscious," she explains.
"But when I turned 18 it just hit me that I can't mope around and feel bad about it, because it's not going anywhere.
"I chose there and then to just embrace it, and I feel so much more confident now."
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While doctors have said there are no surgery options or treatments for her specific type of lymphoedema, Okoh manages the swelling by wearing high compression tights and elevating her leg.
"It's a progressive condition, it goes in stages. If I were to have no treatment or manage the condition, it would be much worse," she says.
"Right now it's one and a half times bigger than the other leg. It can sometimes reduce when I'm managing it, but it'll never be the same size as the other leg."
While Okoh’s friends and family have been incredibly supportive of her condition, she has found that strangers aren’t always as kind.
“I had a woman stop me in the street and tell me that I need to pray," she says. "People will often stop and stare at my legs – some will even come straight up to me and ask what’s wrong with me.
“It’s quite rude and it used to bother me when I was younger, but now I think that people just don’t know enough about it and need educating.
"Rather than getting annoyed, I just explain to them that I have a condition.”
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She believes that celebrities, like Linda Nolan, opening up about living with the condition will help to raise awareness about it.
Earlier this week, singer Nolan, 63, revealed how she has "learned to live" with lymphoedema, which she has experienced following cancer treatment.
The singer revealed the lymphoedema has knocked her body confidence and left her with various health problems, but Okoh has praised the star for speaking out about her experiences.
"I feel like if I had that when I was younger it would have made a difference to my journey of self-discovering," Okoh explains.
"When I was younger, I felt like I was the only person who had it."
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Okoh also believes stars sharing their experience of the condition could help people have a better knowledge about the symptoms to look out for.
"There are so many people out there who might not realise that they have the condition," she explains.
"I have a lot of people see my TikToks and realise that they have the symptoms."
What is lymphadema?
According to the NHS lymphoedema is a long-term (chronic) condition that causes swelling in the body's tissues.
There are two main types of lymphoedema:
primary lymphoedema – caused by faulty genes that affect the development of the lymphatic system; it can develop at any age, but usually starts during infancy, adolescence, or early adulthood
secondary lymphoedema – caused by damage to the lymphatic system or problems with the movement and drainage of fluid in the lymphatic system; it can be the result of a cancer treatment, an infection, injury, inflammation of the limb, or a lack of limb movement
While lymphoedema can affect any part of the body, the condition usually develops in the arms or legs.
It develops when the lymphatic system, a network of channels through the body that fights infection and removes excess fluid, does not work properly.
Lymphoedema is thought to affect more than 200,000 people in the UK. Primary lymphoedema is rare and is thought to affect around one in every 6,000 people, but secondary lymphoedema is much more common.
The main symptom of lymphoedema is swelling in all or part of a limb or another part of the body.
Other symptoms in an affected body part can include:
an aching, heavy feeling
difficulty with movement
repeated skin infections
hard, tight skin
folds developing in the skin
wart-like growths developing on the skin
fluid leaking through the skin
While there is no cure for lymphoedema, it is possible to control the main symptoms using techniques to minimise fluid build-up and stimulate the flow of fluid through the lymphatic system.
The NHS says these treatments can include wearing compression garments, taking good care of your skin, moving and exercising regularly, having a healthy diet and lifestyle, and using specialised massage techniques.
