Patients with Wilson disease and their families attend a meeting of the club opened by the Vietnam National Children’s Hospital’s Department for Liver and Gallbladder. (Photo: suckhoedoisong.vn) Hanoi (VNA) - Trinh Quoc C., 6, was playing with his friends at akindergarten in Hai Phong city seven years ago when he cried out in pain. Hehad been struck with a sudden, severe stomachache.
His mother rushed him to a local hospital wherehe was diagnosed with appendicitis and an operation carried out soon after.That should have been the end of his stomachache. Unfortunately, two monthslater, the little boy was still suffering from stomachache, and he had adistended belly.
C. was then taken to the Vietnam NationalChildren’s Hospital (VNCH) in Hanoi. He was first hospitalised for more than amonth in the infectious diseases department so that all possibilities ofdiseases could be eliminated before being transferred to the liver andgallbladder department where doctors found that he was suffering the Wilson’sdisease.
“At that time, we thought we would lose our son.Even doctors said his chance was only nine percent optimistically,” said hismother Vu Thi H.
C. was lucky to survive after the doctorstreated the genetic disorder in which a person’s liver fails to eliminateredundant copper from the body.
“He has been living a normal life until now bytaking medicines daily and getting his health checked every three months,” saidthe mother.
According to doctors, C. can have a normalfamily in the future. He just has to avoid having a partner with the samedisease.
Nguyen Ba Bac found out he had Wilson’s disease10 years ago when he was a high school student. But thanks to early detectionand treatment, he has been living normally. The copper rate in his body hasdecreased and he stopped taking medicines three years ago. He graduated fromthe Hanoi University of Architecture last month.
But not all children and young people with thedisease are diagnosed early.
Nguyen Minh Tan, 31, had a normal childhood anda normal life as a youth until he was diagnosed with the disease very late as asecond-year college student. As a result, he suffered muscle contractions andhad to be confined to a wheelchair.
“This is a rare disease in Vietnam. Right nowthe hospital is treating 136 children with it,” said Dr Le Thanh Hai, VNCH’sDirector.
“If the disease is discovered early, it can becured in time, helping the patient to integrate into the community, but if not,it can have bad consequences, even death,” Hai said.
Dr. Nguyen Pham Anh Hoa, head of the hospital’sliver and gallbladder department, said that the rate of Wilson’s disease was at1 per 100,000 in men and 4 per 100,000 in women.
“The disease is caused by excess copperaccumulation in the body’s organs with a variety of clinical manifestations,most commonly brain, liver, eye, kidney, joint, and bone damage,” Hoa said,adding that the disease was difficult to detect because it is easily confusedwith other liver or neurological diseases.
"Wilson’s disease is still quite uncommon,not just for lay people, but also for doctors and nurses in the country. Manypatients with this problem are taken to hospitals without diagnosis ordiagnoses of hepatitis or epilepsy,” she said.
Hoa said it is estimated that more than 2,000people in Vietnam have the disease. But the number of patients diagnosed wasmuch less because a large number of people with Wilson’s disease have not beendiagnosed and treated or are being treated for secondary diseases in otherorgans like hepatitis, arthritis, nephrotic syndrome or neuropathy, she said.
In the early stages, the symptoms of the diseaseare often very discreet, such as elevated liver enzymes without clear reasonsthat are often confused with hepatitis, emotional or movement abnormalities.Such symptoms are often overlooked, but if detected early, will be the mosteffective treatment for the disease, Hoa said.
In later stages, patients may have symptoms likespeech difficulties, languid speech, drooling, while children are distracted,hot-tempered and suffer cognitive decline. At a heavier stage, patients sufferjaundice, dry eyes, fatigue, hard joints, movement like robots and evennosebleeds and vomiting blood. Worse yet, it leads to liver failure where themortality rate can be as high as 95 percent without a liver transplant, Hoaadded.
Hoa said that the biggest concern of many Wilsondisease patients was that health insurance only covers medicines for patientsunder 17, when many patients have to take drugs for the rest of their lives.
"Every day, a patient with Wilson’s diseasespends more than 100,000 VND (4.5 USD). Many patients are in a difficultsituation, so they want the insurance to cover medicine fees for older peopleas well,” Hoa said.
The department organised a club for patientswith Wilson’s disease more than a year ago. The club has attracted more than100 members and their families who share experiences and updated knowledgeabout the disease.
"Our volunteers in this club are allpatients with the disease. Many of them have been treated and become stable,”Hoa said.
"There are many children out there, manypatients with this disease have been ignored. I hope that more people knowabout this disease to help early detection and treatment, especially forchildren,” she said.-VNA
VNA
