"Orphan Diseases" -In here, people's collapse may be in an instant

At the entrance of the Medical Genetic Hospital of the Secondary Hospital of Zhejiang University, Lin Lin (pseudonym) who had just returned from the psychiatric department met the deputy chief physician and nursing nurses, who had just returned from the psychiatric department.

"The division of anxiety has dropped a lot, and the depression is still a bit high."

"Take your time, this is only the third treatment, and it will be better later."

Such dialogue often occurs in the pathogenesis of genetic medicine. Professor Wu Zhiying, the person in charge of the ward and secretary of the Party branch of the Medical Genetic Genetics Section, said that most of the patients here have rare diseases in neurological inheritance. Rare causes are also called "orphan diseases". It is usually accompanied by severe psychological trauma.

"Therefore, we will pay special attention to the emotions of patients and family members during the diagnosis and treatment, and add psychological guidance. I hope that their hearts will not be as lonely as orphans."

Branch clinic

Relatives care about it at will

She thinks she is laughing

The 20 -year -old Lin Lin has a clear eyebrow, but a pair of big eyes always deliberately dodge the eyes of others and do not want to communicate with others. Occasionally, a few words, the speed is much slower than her peers, and it sounds a bit strenuous.

She is a patient with liver bean -shaped ribinous degeneration and has recently received the third copper drainage treatment in the Second Hospital of Zhejiang University.

"This is a copper metabolic disorders with hidden inheritance of autosomal chromosomal. Copper disorders can cause liver cirrhosis and brain degeneration diseases. It is often manifested as symptoms such as motor disorder, gait abnormalities, difficulty speaking, and swallowing disorders. "

Lin Lin was diagnosed at the age of 12. At that time, she went to the local hospital for a clinic because of nosebleeds. She found that she had decreased platelets and abnormal liver function.

With the progress of the disease, she not only started to have symptoms of limbs and language, but even her emotions were controlled and distorted.

Entering high school, she appeared in serious schooling emotions, and she could only drop out of school at home. During the period, she tried to go to school to study cars, but her stiffness made her have to give up.

Once, a relative at home asked, "How did you learn to learn a car?" A random concern, but suddenly poked her sensitive heart, and her emotions collapsed in an instant:

Did he laugh at me?

Do you think I am particularly useless?

Why can't I do anything well?

After that, she was diagnosed with double -phase emotional disorders, and emotions often changed alternately between depression and mania.

Capture the patient's mood

Add psychological prescription during treatment

Earlier this year, the symptoms of Linlin liver bean -shaped nuclear degeneration were significantly worsened, and the situation of vague words, hands shake, chewing labor, drooling, etc. have begun to receive further treatment at the Second Hospital of Zhejiang University.

During the first outpatient clinic, Wu Zhiying realized that the little girl's emotional negative and low decline. "Rare diseases are not only rare, but also needed long -term or even life -long treatment. This process is extremely tortured. Will 'observe the color ", pay attention to the emotional changes of patients and family members."

The skull magnetic resonance shows that Lin Lin's tail -shaped head, shell nucleus, hill brain, and middle cerebral back -side abnormal signals, indicating that the nuclear degeneration of liver bean -like has led to brain lesions.

Wu Zhiying explained that her two -phase emotional obstacles, on the one hand, and long -term psychological pressure accumulated, on the other hand, metabolic encephalopathy also exacerbated emotional problems.

Considering that the mother and daughter came from other provinces, she told the ward for medical care to arrange beds priority to minimize the time they waited. Soon, Linlin lived in a medical genetic ward for copper -discharge treatment.

During the hospitalization, the attending doctor Liu Gonglu arranged a multidisciplinary joint consultation (MDT), inviting psychiatrists to evaluate Lin Lin's mental state. The evaluation results were "terrible", and the points of anxiety and depression were extremely high, so clinical treatment added sedative hypnotic drugs, supplemented by psychological guidance.

However, Lin Lin's emotions were still outbreak. One day she talked to her mother and suddenly cried, and she loudly rebuked her mother who didn't care about her, and talked about some self -degrading words.

After the nurses' baggage Xiaoxiao discovered, she temporarily separated the mother and daughter in time. She softened her daughter's excitement and talked with her mother for more than half an hour.

It turned out that the origin of the quarrel was that her mother made Lin Lin get out of bed, and her tone was a little bit harder, which inspired her rebellious psychology. Bao Yingxiao guided, "Talk to her must not be too strong, and the way of communication should be changed. You can say, 'Mom is bored in the room, can she walk with her mother?' Instead of ordering her hardly to order her , 'You should get out of bed and practice. "

The collapse of a person may be in an instant

This scene occurs in the medical genetic ward:

A aunt became angry with the medical staff because of a box lunch, and then apologized: "After retiring, I stayed with him every day after retirement, and I really couldn't stand it."

A father beaten his son impatiently, and his mother cried aside;

Her husband could not accept his wife's genetic disease, and he proposed a divorce during her hospitalization ...

"The emotional problems of rare sick families are as attention as patients. If necessary, we will also have psychological intervention on them, which is also important to the treatment of patients." Bao Yingxiao said.

Wu Zhiying said that patients with rare diseases and their families are like islands. They float on the sea that cannot see the end.Demons, reduce disability, and return to society as well as as healthy as possible. "Guidance experiments

Wen | Qianjiang Evening News Zhang Bingqing

Capture | Longquan Branch Huang Qi

Review | Chen Guozhong Wu Zhiying Fang Preface

Responsible editor | Lai Xinping

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