Man with rare genetic disease vows to make most of life through travel

2017/07/23 21:47:13
Man with rare genetic disease vows to make most of life through travel

Taipei, July 23 (CNA) Life could not have been more cruel to Yu Wen-han (尤文瀚), but the 27 year-old patient of Von Hippel-Lindau (VHL), a rare genetic disorder, said the incurable disease has not stopped him from making the most of his life by traveling the world.

Yu, who has toured Taiwan on a motorcycle and traveled from Australia to Japan and countries in Southeast Asia, said he would like to encourage young people to never give up on their dreams and be confident in what they do.

"My mother suffered from a very rare disease called Von Hippel-Lindau," he said, recalling that he was only 13 when she died from multiple organ failures.

VHL is a cancer syndrome where blood vessel tumors grow and continue to grow throughout various parts of the body, including the brain, spinal cord, kidney, pancreas, inner ear, adrenal glands and eyes.

Although VHL is inherited, it affects every individual differently, even within the same family.

"I developed a symptom where I would experience sporadic flashes on my left eye during high school. It was then that I was diagnosed with VHL."

In a short span of three years, his left eye had deteriorated to a point where he could no longer see, Yu sighed, saying that he had to eventually give up on his favorite sport -- basketball.

But this setback did not dampen his spirit, as he remained nevertheless positive on life.

"I wanted to make the most of my life through travel, and to experience new things," he explained.

Last year, Yu was found to have developed a cyst in his kidney during a routine medical checkup, and was scheduled to have it surgically removed six months later.

But this incident didn't put him down. Instead, he decided to make use of the time waiting for surgery to tour around China on a motorcycle.

From Beijing, Yu went as far as Xinjiang in western China to Hainan Province in the south. According to Yu, the journey was completed in 100 days.

The 30,000-kilometer journey was an unforgettable experience, he said, adding that the scenery ranged from hot sandy deserts to refreshing mountains, with each scene featuring its unique beauty and flavor.

"The experience has given me a sense of peace and satisfaction, and I hope to use this opportunity to encourage young people to follow their heart and never shy away from their dreams."

(By Chang Ming-hsuan and Ko Lin)
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