Rare diseases are diseases with very low prevalence. The incidence rate varies from 1/10000 to one in a million. We may have heard of some of these diseases, such as frostbite and hemophilia, but more are unheard of diseases. It means that rare and rare patients are difficult to understand the pain.

February 28, 2021 is the 14th International Day of rare diseases. Since February 23, Shanghai Education Television’s “help girls” column has joined hands with Shanghai rare disease prevention foundation to enter this special group. Let them be understood, seen and treated well. Although they are very rare, our love is never rare.

-

Careful:

Bathing in the sun has become a luxury for them all their life.

Even if you desire, you will eventually find the shelter of darkness.

Among various rare diseases, there is a special hereditary skin disease epidermolysis bullosa. Patients with this disease are also known as butterfly babies, because their skin is extremely vulnerable, as fragile as butterfly wings, and any slight touch from the outside world may cause harm to them.

At present, there is no cure for this disease, and patients can only be in great pain for life. It costs five or six thousand yuan a month just to apply the gauze on the broken skin of the patient.

At the age of 17, Zhou Mi has been fighting against the disease since she was born. Since she was a child, she has shown special talent in the field of painting and expressed her love and desire for life with a brush.

Those rare pain and love (1)

Shanghai Education TV station’s “Gang girl” series reports

Premiere: 20:05, February 23

Replay: 16:30, February 24

--

Tang Fenglei:

I’ve been with pain for 20 years,

Pain reminds me how brave I am.

Tang Fenglei, 32, from Jinshan, Shanghai, suffers from Fabry’s disease. The main symptom is intermittent severe pain in his hands and feet.

Tang Fenglei has developed symptoms since he was seven years old. However, the incidence rate of the disease is very low, and even the medical profession knows little about it. Tang Fenglei was misdiagnosed continuously in the 20 years after his onset.

In order to relieve pain, Tang Fenglei has taken a truck of painkillers over the years.

At present, the drugs for the treatment of Fabry disease have been listed in China, but it has not been listed in the medical insurance catalogue. To this end, patients have to face huge costs of up to one million a year. In order to promote the entry of relevant drugs into medical insurance, Tang Fenglei and other patients are still making efforts to appeal to the public.

Those rare pain and love (2)

Shanghai Education TV station’s “Gang girl” series reports

Premiere: 20:05, February 24

Replay: 16:30, February 25

--

Tong Tong:

“My life is up to me, not heaven”,

I want to be a normal child.

This issue tells the story of sticky baby:

Child patients represented by Tongtong (7 years old) and Beibei (12 years old) suffer from rare mucopolysaccharide storage disease, resulting in bone deformation, serious damage to growth and development, and even life-threatening.

A rare disease destroyed the child’s young bones. 7-year-old Tong Tong is less than 1 meter tall. Her wish is to be a dancer.

The growth and development of 12-year-old Beibei is obviously weaker than that of children of the same age. For this reason, his family has paid several times more ordinary care and companionship.

At present, some drugs used to treat mucopolysaccharide storage disease have been introduced into China and have not been included in medical insurance. The cost of medication borne by the patient’s family is as high as 2 million a year. This group is looking forward to more social attention and creating hope for children.

Those rare pain and love (3)

Shanghai Education TV station’s “Gang girl” series reports

Premiere: 20:05, February 25

Replay: 16:30, February 26

--

Liu Xuanfei:

No matter what life gives you,

There’s always something you can do.

There is a disease in the world that makes people lose all their senses slowly and finally leave the world quietly. It is the adrenal leukodystrophy that Liu Xuanfei unfortunately suffers from.

When he was young, he had a successful career and a happy family. He was once an elf on the basketball court; Now, he is getting thinner and hobbled, and can only face the erosion of disease. It took 13 years from the onset to the diagnosis.

After the diagnosis, Liu Xuanfei has been committed to speaking for the group of rare diseases. He insisted on setting up webcast every week to share his life with fans, encourage patients with rare diseases to face life actively, and let more people pay attention to the group of patients with rare diseases.

Adrenoleukodystrophy is a degenerative disease, and the physical symptoms will gradually worsen. Liu Xuanfei is racing against his illness every day. Next, he plans to carry out a ten thousand mile trip to rare diseases, drive around major cities in China, visit patients and doctors, and let more people know the living and medical status of these people.

Those rare pain and love (4)

Shanghai Education TV station’s “Gang girl” series reports

Premiere: 20:05, February 26

Replay: 16:30, March 1

--

2.28 international day of rare diseases:

Born rare, love is not rare

Shanghai Education Television station and Shanghai rare disease prevention foundation jointly held a large-scale public welfare activity of “love is never rare” with the theme of caring for rare disease groups.

Dr. Xie Lijuan, former vice mayor of Shanghai Municipal People’s government, founder and consultant of Shanghai rare disease prevention and control foundation, Li Dingguo, President of Shanghai rare disease prevention and control foundation, and sun Xiangtong, President of Shanghai Education Television station

Rare diseases are diseases with very low prevalence. The incidence rate varies from 1/10000 to one in a million. We may have heard of some of these diseases, such as frostbite and hemophilia, but more are unheard of diseases. It means that rare and rare patients are difficult to understand the pain.

February 28, 2021 is the 14th International Day of rare diseases. Since February 23, Shanghai Education Television’s “help girls” column has joined hands with Shanghai rare disease prevention foundation to enter this special group. Let them be understood, seen and treated well. Although they are very rare, our love is never rare.

-

Careful:

Bathing in the sun has become a luxury for them all their life.

Even if you desire, you will eventually find the shelter of darkness.

Among various rare diseases, there is a special hereditary skin disease epidermolysis bullosa. Patients with this disease are also known as butterfly babies, because their skin is extremely vulnerable, as fragile as butterfly wings, and any slight touch from the outside world may cause harm to them.

At present, there is no cure for this disease, and patients can only be in great pain for life. It costs five or six thousand yuan a month just to apply the gauze on the broken skin of the patient.

At the age of 17, Zhou Mi has been fighting against the disease since she was born. Since she was a child, she has shown special talent in the field of painting and expressed her love and desire for life with a brush.

Those rare pain and love (1)

Shanghai Education TV station’s “Gang girl” series reports

Premiere: 20:05, February 23

Replay: 16:30, February 24

--

Tang Fenglei:

I’ve been with pain for 20 years,

Pain reminds me how brave I am.

Tang Fenglei, 32, from Jinshan, Shanghai, suffers from Fabry’s disease. The main symptom is intermittent severe pain in his hands and feet.

Tang Fenglei has developed symptoms since he was seven years old. However, the incidence rate of the disease is very low, and even the medical profession knows little about it. Tang Fenglei was misdiagnosed continuously in the 20 years after his onset.

In order to relieve pain, Tang Fenglei has taken a truck of painkillers over the years.

At present, the drugs for the treatment of Fabry disease have been listed in China, but it has not been listed in the medical insurance catalogue. To this end, patients have to face huge costs of up to one million a year. In order to promote the entry of relevant drugs into medical insurance, Tang Fenglei and other patients are still making efforts to appeal to the public.

Those rare pain and love (2)

Shanghai Education TV station’s “Gang girl” series reports

Premiere: 20:05, February 24

Replay: 16:30, February 25

--

Tong Tong:

“My life is up to me, not heaven”,

I want to be a normal child.

This issue tells the story of sticky baby:

Child patients represented by Tongtong (7 years old) and Beibei (12 years old) suffer from rare mucopolysaccharide storage disease, resulting in bone deformation, serious damage to growth and development, and even life-threatening.

A rare disease destroyed the child’s young bones. 7-year-old Tong Tong is less than 1 meter tall. Her wish is to be a dancer.

The growth and development of 12-year-old Beibei is obviously weaker than that of children of the same age. For this reason, his family has paid several times more ordinary care and companionship.

At present, some drugs used to treat mucopolysaccharide storage disease have been introduced into China and have not been included in medical insurance. The cost of medication borne by the patient’s family is as high as 2 million a year. This group is looking forward to more social attention and creating hope for children.

Those rare pain and love (3)

Shanghai Education TV station’s “Gang girl” series reports

Premiere: 20:05, February 25

Replay: 16:30, February 26

--

Liu Xuanfei:

No matter what life gives you,

There’s always something you can do.

There is a disease in the world that makes people lose all their senses slowly and finally leave the world quietly. It is the adrenal leukodystrophy that Liu Xuanfei unfortunately suffers from.

When he was young, he had a successful career and a happy family. He was once an elf on the basketball court; Now, he is getting thinner and hobbled, and can only face the erosion of disease. It took 13 years from the onset to the diagnosis.

After the diagnosis, Liu Xuanfei has been committed to speaking for the group of rare diseases. He insisted on setting up webcast every week to share his life with fans, encourage patients with rare diseases to face life actively, and let more people pay attention to the group of patients with rare diseases.

Adrenoleukodystrophy is a degenerative disease, and the physical symptoms will gradually worsen. Liu Xuanfei is racing against his illness every day. Next, he plans to carry out a ten thousand mile trip to rare diseases, drive around major cities in China, visit patients and doctors, and let more people know the living and medical status of these people.

Those rare pain and love (4)

Shanghai Education TV station’s “Gang girl” series reports

Premiere: 20:05, February 26

Replay: 16:30, March 1

--

2.28 international day of rare diseases:

Born rare, love is not rare

Shanghai Education Television station and Shanghai rare disease prevention foundation jointly held a large-scale public welfare activity of “love is never rare” with the theme of caring for rare disease groups.

Dr. Xie Lijuan, former vice mayor of Shanghai Municipal People’s government, founder and consultant of Shanghai rare disease prevention and control foundation, Li Dingguo, President of Shanghai rare disease prevention and control foundation, and sun Xiangtong, President of Shanghai Education Television station