EADAIN Hegarty only eats bread, rice and boiled vegetables – and if she’s going out for a meal, she only ever goes for a Chinese.
The 19-year-old, from Cork, Ireland, isn’t a picky eater by choice. Instead, she suffers from a rare, incurable condition that only affects a few hundred people across the world – as well as Yorkshire terriers.
Eadain was diagnosed with primary intestinal lymphangiectasia (PIL) three days before her first birthday.
Because of the condition, her small intestine is leaky and swollen, causing her to lose vital proteins and other nutrients.
It’s an incredibly rare disorder, with less than 500 cases reported globally.
To manage her condition, Eadain has to adhere to a very strict diet of bread, pasta, rice and boiled veg, in order to avoid agonising gut symptoms.
She can only have up to half a gram of fat in her food and can’t drink milk because of its high-fat content.
When she does eat foods with a higher fat content, Eadain describes her symptoms “like IBS on steroids”.
A slice of cheese pizza is totally off the cards, as it would contain around 10 grams of fat.
When she does go out for dinner, it’s often Chinese food – though you won’t see sweet and sour chicken or egg fried rice on her plate.
“If [my friends] suggest dinner, it’s going to have to be a Chinese,” Eadain said.
“My order is boiled rice, steamed or boiled chicken and veggies.”
Eadain’s PIL symptoms started off when she was just a baby.
Eadain, a student, said: “I was always sick as a baby, going through 12 nappies a day.
“I was constantly in and out of hospital.”
A specialist visited the Children’s Health Ireland hospital in Crumlin and suggested Eadain may have PIL.
After doctors conducted a barium test – a type of X-ray to detect gut or digestive issues – she was diagnosed with PIL.
Symptoms can include swelling in the legs, stomach pain, diarrhoea, weight loss and extreme tiredness.
After trialling a restrictive low-fat diet, Eadain’s health started to improve.
For her worried parents, Eadain said that “it was definitely a relief”.
What is primary intestinal lymphangiectasia (PIL)?
Primary intestinal lymphangiectasia (PIL) is a rare digestive disorder that affects the lymph vessels connected to your small intestine, making it damaged and leaky.
Lymph vessels are tiny channels throughout your body that pick up fluids, proteins and other things from your tissues.
The lymph vessels then drain this fluid, called lymph, back into your bloodstream.
In PIL, the lymph vessels leak fluids and proteins back into the intestine instead of absorbing them.
This can cause low protein levels and other nutrient deficiencies.
The main symptom of PIL is fluid retention, which healthcare providers call lymphedema.
You’ll likely notice it first in your child’s legs and feet.
Eventually, they retain so much fluid that their face, arms and genital area also swell.
Your child may also have swelling around their heart and fluid in their chest or ascites.
Other intestinal lymphangiectasia symptoms may include:
- Abdominal pain
- Nausea and vomiting
- Diarrhoea
- Fatigue
- Weight loss
- Inability to gain weight
Source: Cleveland Clinic
She said: “They were able to change my diet and see a positive effect.”
The condition has affected her life in many small ways over the years.
She said: “My mum had to make food for me if I went to parties.
“The other children would be having pizzas and I would be having burgers.
“I felt like they were looking at me differently.”
‘Really frustrating’
As an adult, Eadain is incredibly restricted in where she can go and what she can eat.
She said: “I have to call ahead to places and ask ‘can you make this?’
“Sometimes, they’ve said ‘yes’ and then I arrive and they can’t do it.
“It is really frustrating.”
As a result, she often ends up eating in the same spots when going for meals with friends, as she can trust they will cater for her dietary needs.
The teen also suffers from additional health issues, such as chronic pain and migraines, endometriosis and Postural Orthostatic Tachycardia Syndrome (POTS).
Eadain tries to take each day as it comes, as her combination of health conditions mean that every new day brings a unique challenge.
But she can still find the light in her situation, often joking about PIL’s prevalence in dogs.
Dog breeds like Yorkshire terriers can also develop the uncommon condition.
Eadain often pulls that fun fact out at parties.
Eadain’s diet
Breakfast: Toast or bagel with jam, fruit
Lunch: Pasta with chicken or turkey
Dinner: Chicken or turkey and rice or potatoes with carrots
Snacks: Jelly sweets
