ITP: An Unpredictable Disease

A few years ago, Lauren Truong was so ill that her mom, Joanna, wondered if her daughter could live the active life of a typical teenager. She was afraid to let Lauren play sports or spend the night at a friend’s house.
Lauren, 15, has a rare blood disorder called immune thrombocytopenia (ITP). The condition means people have low numbers of platelets in their blood, which can lead to severe bleeding and bruising.

Today Lauren loves to run cross-country and hang out with her friends. She enjoys living on her family’s farm in central Mississippi. Lauren manages her ITP with medication and monthly check-ups. But there is a chance that her ITP symptoms will return. Or her ITP could go away. It is an unpredictable disease. There is no cure.

“All her life, Lauren couldn't do anything,” Joanna says. “She felt ‘bubble wrapped.’ Now, she gets to do cross-country. She's got a little bit of normal in her life.”

The path to ITP diagnosis 

The Truong family learned Lauren had ITP about 10 years ago. Lauren, then 5, began to get bruises that no one could explain. Joanna worried that someone at school was hurting Lauren. Lauren’s teachers worried someone at home was the cause of the bruises. Neither was true. So they wondered – what was causing them?

One day Lauren started coughing up blood, so bad that a bathroom sink at home filled with her blood and blood clots. She continued coughing up blood on the way to the emergency room.

Doctors thought she had allergies. But when Joanna showed them the bruises on Lauren’s body, they ordered blood tests. Lauren’s platelet counts were low, which led to her diagnosis.

ITP symptoms are hard to predict

Doctors said that Lauren might grow out of the disease, or she could have it for the rest of her life. For about 3 years, Lauren did not show symptoms.

But when Lauren was 9, she had a nosebleed that lasted for 2 days. On the way to the hospital, Lauren started coughing up blood. When they got there, Lauren collapsed in the hospital atrium. She was taken to the intensive care unit.

“It was very scary, seeing her lying there helpless,” Joanna says. “She was so weak. All these people were working on her. I could not do anything to help her.”

Lauren received blood transfusions, but they did not work the way the care team hoped. She got weaker and weaker. Finally, she was put on a ventilator to help her breathe. Gradually her health improved, and she was taken off the ventilator.

Afterward, Lauren needed physical therapy and counseling because of the trauma she experienced. She had to learn to walk again because she had spent so much time in bed.

She also had an incident where a blood clot caused her leg to swell. She was in the hospital for a week. Another time she had chest pain and was hospitalized.

Later on, Lauren was also diagnosed with a condition called Evans syndrome, which causes people to have a low number of red blood cells.

Living with ITP

Today, Lauren’s symptoms are manageable with medicine. She keeps a journal to help her process her thoughts and experiences.

“It's easier to write than it is to talk to people sometimes because you don't feel like someone is judging you,” Lauren says. “When you feel sad or if you're grieving, you may not want to talk to anybody.”

For most of her life, Lauren could not take part in physical activities because they put her at risk for injury, which could cause bruising and bleeding. Running cross-country has brought her a sense of belonging.

“Growing up when I couldn't do anything, I never really tried because there was no point,” Lauren says. “But now that I’ve been cleared to do things, I'm open to doing more.”

Sitting out was hard on her emotionally. Lauren says it helped to talk to someone about her feelings.

“At school, there are counselors to talk to,” she says. “A lot of people tend to hold things in. Don’t close yourself off from other people.”

Sometime in the future, Lauren may stop taking her medication so her care team can see if she still needs it to control ITP, Joanna says.

Meanwhile, Joanna is learning to give Lauren more independence. It is hard because Joanna worries the ITP symptoms may come back. Soon, Lauren will learn to drive. In a few years, she will go to college. As a mother, it is difficult not to worry.

“I can remember when she went to the hospital and had all these episodes,” Joanna says. “Now that she's a teenager, it's a different worry. But it's a good worry because I know I've raised her with a good foundation. She's grown up to be beautiful. She's grown up to be wiser, sometimes hardheaded, sometimes sassy. I was like that when I was her age. Growing up is a part of life.”