Woman with uncontrollable bleeding from eyes, mouth looking for 'a bit of hope'

Hawaii woman who bleeds from eyes and tongue is desperate for answers
Published: May. 13, 2015 at 6:21 PM HST|Updated: Jan. 8, 2016 at 11:34 PM HST
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WAIKELE,OAHU (HawaiiNewsNow) - The year Linnie Ikeda graduated from high school, she was diagnosed with a rare disorder that left her in pain and with unexplained bruises so bad some initially suspected she was the victim of abuse.

Two years later, in 2010, an even more troubling and puzzling symptom emerged: The 24-year-old Waikele woman started bleeding from her eyes and tongue, uncontrollably and without warning.

To date, dozens of doctors haven't been able to explain the symptoms -- or offer her any relief.

"When it bleeds, it doesn't hurt. It's what leads up to the bleeding," Ikeda said. "I'll feel pressure on my eyes, my eyes will be puffy and raw and that's when I know my eyes are going to bleed."

It all started in 2008. Ikeda experienced sharp pains all over her body. A short time later, large, painful bruises would appear. That led people to believe that she was being abused.

Ikeda was eventually diagnosed with Gardner-Diamond Syndrome, a rare condition that causes random bruising. It's associated with stress and anxiety.

Doctors were treating her for the syndrome when new symptoms started to emerge: In 2010, Ikeda's tongue started bleeding for no reason. It would split right down the middle and bleed, sometimes for days.

"I had 11 surgeries to cauterize the base of my tongue and to cut the blood vessels and I had 7 transfusions," she said.

A year later, the bleeding got worse and started coming from her eyes. It mostly happens in the overnight hours, when she's asleep.

Her mother, Lisa Ikeda, will often go into her daughter's room and find her with blood all over her face and bed. Lisa Ikeda said the bleeding typically starts about about 2 a.m. and lasts until about 5 a.m.

"I've actually slept with her and I've gotten up every hour to check on her," she said.

"It's always around that time that she has that bleeding. I'll usually wake her up and say, 'Honey, let's go clean up.' Or if it's not that much, I'll just wipe her up and she goes back to sleep. A lot of times, it's been bad, in her hair and everything so she'll go shower."

A normal childhood

Linnie Ikeda was born in August of 1990. She had a normal, happy childhood. Pictures show her swimming, playing soccer, and playing with dolls.

Framed portraits displayed in the family's Waikele home show Ikeda with her parents and sister.

In 2008, she graduated from Pearl City High School. It was supposed to be one of the happiest years of her life. Instead, it was one of her darkest.

Doctor appointments took up all of her free time, and her condition was frustrating and scary.

Since being diagnosed, Ikeda has seen 30 different doctors, including doctors at the Mayo Clinic in Minnesota. While the doctors were familiar with Gardner-Diamond Syndrome, they had never seen a case that includes bleeding from the eyes or tongue.

Lisa Ikeda has been to every single appointment with her daughter. "My kids mean the world to me," she says.

Added dad, Miles, "It's just so frustrating because we can't establish a pattern."

Desperate for a diagnosis

Linnie Ikeda has kept a detailed journal over the years. As she reads the entries out loud, it's clear, she struggles.

"I want to be normal," she says.

While the bleeding mostly happens while she sleeps, it does sometimes drip, like tears, during the day. She sometimes wears an eye patch so the bleeding doesn't shock people. But wearing the patch in public is not something Linnie likes to do.

"They make fun of me," Linnie said. Strangers call her a pirate or other names.

"It hurts me like it would hurt any other person being bullied."

Her mom and sister have seen and heard the hurtful things people do. "She sees people staring at her, or making fun of her," Lisa Ikeda said. "As much as it hurts inside she tries to go on with her life."

Learning to cope

While the teasing has been tough for Linnie Ikeda, she says she is learning to live with the bleeding and bruising.

She's a teaching assistant and despite her condition, rarely misses school.

Her endurance inspires her friends and family. "Linnie has been such a strong person and a source of inspiration," says Mavis, her older sister, "She doesn't just curl up in a ball and say, 'Why me?'"

Linnie has fought this battle quietly for years; only her family and close friends knew about her condition. But she finally decided to share her story. If no one can diagnose her symptoms, she says, at least she can provide comfort to someone else who's suffering in silence.

"The people that are going to fight for me, believe in me, that's what makes me go on and live every day ... to do the best I can," she said.. "What I'm looking for, is just that bit of hope. You want to see the light at the end of the tunnel."

To view photos of Linnie's journey on a mobile device click HERE.

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