Born to the sun! Don't let this rare disease in "The Amazing Dad" destroy your dreams

Recently, there is another film about father and son

Brushed up in the circle of friends,

After the release

The ratings of major social platforms continue to rise,

It has also been used by official platforms such as People's Daily and Xinhua News Agency

Posted likes,

It has gained a very high reputation.

Like most Eastern fatherly love,

Xiao Daming, the father played by Wang Yanhui, is introverted and subtle,

Helping his son, Who suffers from a rare disease, Sholdong early

Plan your life,

Hope he passes through a skill,

Ability to take care of yourself.

Yet the father's painstaking heart

It can't be understood by the son at the beginning,

From rebellion to growth

It is the only way to go through life.

Father and son who ultimately do not understand each other,

In a marathon race "swap identities",

Standing side by side on the starting line,

Pushing the limits of their lives...

The film is full of warm details,

Let the audience laugh in tears at the same time,

It has also brought a rare disease into the public eye

- Multiple sclerosis (MS)

interview

On the eve of the release of the movie "The Great Dad", we interviewed a Mr. Gao from Cangzhou who had the same encounter as Xiao Erdong.

According to reports, in July 2020, Mr. Gao accidentally found that his fingers in one hand were numb, and later slowly developed to numbness in the palms and hands. Initially treated at the local clinic, I have taken blood-activating drugs and tried massages to see no improvement. In a number of hospitals and departments, in October of the same year, he passed the MRI examination and was diagnosed with multiple sclerosis.

"I don't know much about this disease, the doctor told me that it is very serious, easy to relapse, poor control may be disabled, and there is psychological pressure at once." I did not dare to tell my family about my illness, for fear of falling disabled and becoming a burden on my family. ”

When he was hospitalized, Mr. Gao communicated with patients in the same ward, and the despair after learning of his illness made him have the idea of taking his life for a while.

The causes of the disease are complex, and "early diagnosis and early treatment" needs to be strengthened

In fact, multiple sclerosis is not a "congenital" disease described in the film. The disease was first identified as early as 1873, but even today, more than 100 years after the discovery of multiple sclerosis, the etiology of MS is still unknown and may be related to multiple factors such as viral infection, autoimmune response, genetics, and the environment.

Multiple sclerosis is an immune-related disease of the central nervous system in which a patient's own immune system attacks the myelin sheath that protects the nerve, causing damage to nerve function. The incidence of multiple sclerosis in China is about 0.235/100,000, about 30,000 patients, and was included in the first batch of rare diseases in China in 2018.

Due to the different locations of damage to the central nervous system, the symptoms of the disease are not the same, and patients generally have decreased vision, diplopia, limb sensory impairment, limb movement disorders, ataxia, bladder or rectal dysfunction, etc.

Professor Tan Guojun, deputy director of the Department of Neurology of the Second Hospital of Hebei Medical University, introduced: "The clinical manifestations of multiple sclerosis are diverse, and the symptoms of different patients at different times are not the same, which is easy to be confused with other diseases. There is no specific diagnostic method for multiple sclerosis, and the diagnosis can only be confirmed by comprehensively understanding the medical history, combining laboratory, imaging, and other tests, and excluding other similar diseases. Professor Tan Guojun introduced that at present, many patients, even doctors, have insufficient understanding of the disease, and the diagnosis cycle is long, resulting in many patients being misdiagnosed as other diseases.

"In the long run", early and efficient treatment is the key

Multiple sclerosis is a disease with a progressive course, if it is not treated in a timely and effective manner, patients may experience irreversible neurodegenerative lesions after experiencing multiple relapses and remissions, which eventually leads to severe disabilities such as paralysis and blindness. Treatment is a lengthy process for patients and requires long-term integrated management.

The film does not mention whether Sholdong received treatment during the remission period, and the excessive fatigue of long-term training, coupled with emotional fluctuations and the infection caused by the grinding of the soles of the feet, may indeed induce the recurrence of the disease.

Regarding how to treat MS, Professor Tan Guojun introduced that MS uses short courses and high-dose glucocorticoid shock in the acute stage to achieve the purpose of alleviating the onset of acute symptoms. But it is even more important to carry out standardized DMT therapy (disease correction therapy) during remission. Treatment in remission aims to control disease progression, prevent recurrence, delay the progression of disability, and maximize the improvement of patient life. At present, a number of DMT drugs have been listed in China, among which Terifluamine, Fingolimod and Sinomod have entered the medical insurance directory. It can be said that for a disease like MS, patients can effectively control disease progression as long as they pass early and efficient treatment, MS is like hypertension and diabetes, patients can coexist with the disease for a long time. In the film, Sholdong is completely avoidable because of a marathon blindness.

Health insurance policies benefit the people, and more new treatments are possible

The most heart-wrenching plot in the film is that the father stops him from taking drugs because he is worried about his son. In real life, in addition to the cases of refusing to take or stopping drugs because of drug side effects, it is more that patients are forced to give up DMT treatment because drugs are not within the scope of outpatient reimbursement, and choose to use hormones and nutritional nerve drugs to "conservatively" treat, but the "conservative" treatment control effect is not ideal.

Professor Tan Guojun introduced that at present, MS has developed from no medicine in the past to a drug option now. If blind discontinuation of the drug during remission will lead to recurrent episodes of the disease, or even disability, it is not advisable. During the treatment process, the doctor will take targeted treatment according to the patient's disease situation, and also help the patient to manage the medication through regular monitoring and follow-up.

But at the same time, Professor Tan Guojun admitted that multiple sclerosis is still incurable, and patients need long-term medication, which means that most patients need to be followed up in outpatient clinics. However, at present, DMT drugs in Hebei Province have not been included in the outpatient special disease reimbursement list, that is, patients can only be reimbursed if they are hospitalized.

"Innovative medicine into medical insurance is a good thing to benefit the people. The next step is to increase the policy protection and improve the level of outpatient protection for patients with multiple sclerosis. This not only 'reduces the burden' on the patient, but also improves patient compliance and treatment effect, reducing the risk of recurrence. In the long run, it will help reduce the overall expenditure of medical insurance, save medical resources, and achieve better patient-centered full-course management. Professor Tan Guojun appealed.

Born to the sun to give patients more care

There are many patients like Mr. Gao, who are ordinary people around us. Like Sholdon in "The Great Dad", he has his own hobbies and lives. Illness destroyed their dreams and changed the trajectory of their lives, but they were still hopeful about the future, trying to fight the disease and live in the sun. The road of life is the same as the marathon, we need the company of relatives and friends along the way, and we need to let go of everything when facing the challenge of illness, including our former selves. Learn to beat yourself with love and tolerance, come on! It is expected that every patient can be treated and return to normal life.

Yan Durong media reporter Tan Yanan

Source: Yanzhao Metropolis Daily