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High School Student Creates Headache Tracker to Help Brain Tumor Patients

Jeremy Siregar and Dhania Sarahtika
June 7, 2018 | 1:53 pm
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'Guardian' in action. (Photo courtesy of Gardyan Priangga Akbar)
'Guardian' in action. (Photo courtesy of Gardyan Priangga Akbar)

Jakarta. Two years ago, Gardyan Priangga Akbar, now a seventeen-year-old eleventh grader at Bina Nusantara high school in South Jakarta, had to undergo two surgeries for a brain tumor. After the surgeries, he still suffered from severe headaches that made him feel as if his head and eyes were being stabbed repeatedly. The pain was so intense, and the headaches came so frequently, that he had to take a year off school.

Gardyan's doctor told him to take notes after each headache came on: what the pain was like, how long each headache lasted, how many painkiller pills he took. But the headaches came every three minutes, so taking notes manually quickly became almost impossible.

Luckily, like a true member of Generation Y, Gardyan was familiar with computer programming. Instead of wasting his time punching in data into Microsoft Excel, he created a new computer program called "Guardian" – a pun on his own name – that allows people like him to record recurring headaches and help doctors diagnose their illness.

The program had a soft launch at the Jakarta Neurology Update Workshop & Symposium (Jaknews) at Hotel Borobudur in Central Jakarta on March 16. Around 500 neurologists from all over Indonesia attended the event.

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Gardyan, who has since gone back to his high school at Binus Simprug, said, "Taking notes manually like my doctor ordered was too repetitive for me. Luckily I was learning programming at the time, so I challenged myself to make this program, to help me record accurate data about my headaches."

Gardyan took a programming course from Binus Center and developed an early version of the Guardian program using C++ before switching to Java. In the beginning, he consulted a programming teacher, but soon after he was doing everything himself.

Essentially, Guardian is a kind of diary for people who suffer from frequent headaches to keep records of their illness. The program asks a set of questions to users, the same questions that Gardyan’s doctor asks him every time they meet.

"After you input your data for a certain length of time, the program will create a graph or a trend that users and their doctors can use to see if their condition is improving, or getting worse," Gardyan said.

Speeding Up Diagnosis and Treatment

Gardyan said his program can help doctors diagnose what types of headaches a patient is suffering from faster and come up with the right course of treatment before the headaches get too much.

Tiara Anindhita, a neurologist at Jakarta’s Cipto Mangunkusumo Hospital, who has been treating Gardyan, said the boy had already gone through radiotherapy and radiosurgery before he started taking extensive notes using the program, but his condition did not improve.

Even when she increased the dose of his medication, Gardyan's headaches kept coming and were getting worse and worse.

In the end, the notes compiled with Guardian helped Tiara choose the right medication in the right dose for Gardyan. She said head pains are subjective and only the patient knows exactly what the sensations are like when they come. A diary of headaches such as a the one provided by Guardian helps doctors understand each patient more accurately.

'Guardian' in action. (Photo courtesy of Gardyan Priangga Akbar)

Tiara was the one who persuaded Gardyan to modify the app so it can be released for public.

At first Gardyan had hesitated because he had used illustrations taken from the internet on the program. Luckily Tiara, a staff lecturer at the University of Indonesia, knew a friend and ex-student who works as a medical illustrator.

"The three of us worked on the program, adding many other information doctors usually need," Tiara said.

The program is tailored for people who suffer from recurring, painful headaches.

"There are many types of headaches. The most common are migraine and tension-type headaches, but they can also be symptoms of other illnesses. This program will help identify them," Tiara said.

She also said the program can help patients speed up their healing by helping them identifying triggers for the headaches so they can avoid them.

Made By and For the Patient

So far Guardian is only available for doctors. According to Tiara, 30 doctors have signed up to get the program since the soft launch. They will be given a link to download Guardian to their computers.

There is now only a desktop version, but she said plans are already afoot to make a mobile version.

Tiara said there only three other programs similar to Guardian that she and Gardyan have been able to find online. All of them are designed specifically for migraines, have confusing user interfaces and use content translated from other languages.

"There is no other program like this that is made in Indonesia, and made by the patient himself. The other apps are made by programmers, not patients. This [Guardian] is made by a patient who knows exactly what's happening to his body and what kind of information his doctor needs," Tiara said.

Gardyan said he doesn’t intend to make a profit out of Guardian, at least not just yet.

"I want to help people first," he said.

 

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