Qianjiang Evening News·Hourly News Reporter Wu Chaoxiang Correspondent Zou Yun Xie Chen
Dandan is 12 years old, she is a young girl from Hangzhou, but when she grew up in the city, she has never eaten fish, shrimp or crab, and dreams of eating fresh shrimp. For a long time, she can’t eat ice cream; she can’t eat cakes...
Every summer, no matter how hot, Dandan wears long trousers, she dare not wear beautiful flowered skirts and short shorts...
Dan Dan suffered from atopic dermatitis since childhood.
She has a different childhood. She often asks her mother: "When will I be better?"
's mother always answers: When you grow up.
"Actually, I know, this is a lie." Dandan's mother Huang Qi (pseudonym) does not know when this lie can be said.
Photo courtesy of Vision China
Mom, I think they are a little afraid of me
Huang Qi pulled out a picture of her daughter from her phone: Dandan with big eyes, standing by the lotus pond, stretching her arms, smiling sweetly.
This is a photo taken while traveling some time ago. This is also the best time of the year for Dandan. Sometimes this time is one month, sometimes only half a month.
Huang Qi turned up another photo: Dandan's eyes, face, chest and back, hands and legs are densely packed, all with red bumps. There is damage in some places and scabs in some places.
This is Dandan's worst time. Most of the time, she has such erythema, the only difference is where it grows. Dandan like
always attracts strange eyes from strangers.
"She didn't feel it when she was a child, maybe after she was in elementary school, she could feel this look." Huang Qi remembered taking her daughter to a shopping mall once, Dan Dan suddenly grabbed her and asked quietly, "Mom, I think They are a little afraid of me."
Huang Qi twitched her nose slightly. After many years, she still had trouble controlling her emotions when she thought of that scene again.
Huang Qi thought about it many times: How did her daughter get this special disease?
Dandan has many red spots on his face after he was born. Most newborns have eczema, Huang Qi didn't pay attention.
Four or five months ago, Dandan had rashes not only on his face but also on his waist, legs, neck and shoulders.
Huang Qi looked for ointments for treating eczema, moisturizing ointments, domestically produced and overseas, "it was useless." When
Dandan was more than 1 year old, one of her family members ate crabs and gave her a little bit of crab legs. Meat. Two or three days after that, her face suddenly became red and swollen, and her entire face looked like she had been burned. After two days of intravenous drip in the hospital, it was controlled by hormones.
"I sometimes wonder if she did this afterwards, was it all because of the crab meat." Huang Qi said. Dr.
said that Dandan is a child with eczema and is prone to allergies. Because of allergies, Dandan also caused asthma twice.
"The first time was when I was more than 1 year old, I suddenly couldn't catch my breath in the middle of the night. I reported to the hospital and the doctor directly let me into the rescue room." That was the first time Huang Qi realized that her daughter's eczema was unusual.
The children ate snacks and she drank boiled water
When Dandan was two years old, Huang Qi began to strictly control her diet. "You can't drink milk powder, milk, or yogurt because of intolerance. She drank hydrolyzed protein milk powder too late and didn't accept it at all." Dandan can't touch fish, shrimp, crabs and other seafood. She is allergic to flour. All pasta can't be eaten.
"For so many years, our family has only one breakfast: porridge, fried bacon. We don't eat eggs, bread, steamed buns, noodles." Huang Qi said, "Our soy sauce is made with coconut, because Normal soy sauce contains soybeans, which can also cause allergies.” Huang Qi removed all the foods that might cause allergies from Dandan’s recipe. She did not dare to take risks, “Neither beef nor mushrooms. "
After Dandan goes to kindergarten, he needs to take lunch every day from home. The saddest thing is that the children eat biscuits and drink milk during the extra meal.
Photo courtesy of Vision China
"She can only sit and drink boiled water." Huang Qi couldn't bear to buy a kind of biscuits made of sorghum and corn for her daughter to take to kindergarten. He bought milk powder with hydrolyzed protein and asked the teacher to help it. Dan Dan drank, "To be honest, the biscuits are not delicious, the milk powder is even more ugly. My daughter said to the teacher: I don't drink it, you can throw it away, but don't tell my mother, this is very expensive."
readIn kindergarten, because the children were still young, Dandan did not encounter any social barriers. But in summer, Huang Qi still habitually puts on long pants for her daughter. "One is afraid of her scratching, and the other is that as a mother, I can't bear the strange gaze that others look at her." Mommy
, when will I get better? Some subtle changes appeared when Dandan was in elementary school.
"They are all new classmates. It must be strange to see her like this for the first time." Huang Qi always thinks in another way, so she understands others and comforts herself. When
first started school, some parents approached the head teacher to inquire about Dandan.
"They are afraid that this disease may be contagious." Huang Qi told the head teacher that she could explain to everyone during the parent meeting that atopic dermatitis is not contagious. The teacher in charge of
said no to Huang Qi and she would communicate.
All school uniforms are worn in school. In summer, girls’ school uniforms are short sleeves and skirts. Huang Qi never wears skirts for Dandan. No matter how hot the weather is, trousers are her standard. When
came back from school one day, Dandan told her mother one thing: In the class, whoever chooses the best can wear a red scarf. A classmate in the same group did not vote for Dandan.
She wanted to know where she did not do well, so she asked the other person, the classmate didn't speak, but pointed Dandan's face with her finger. During that time, Dandan's face was all red and rash.
Image courtesy of Visual China
Dandan asked Huang Qi: "Mom, why am I doing this? When will I be fine."
Huang Qi's heart seemed to be pinched by a hand, she was forced to bear the sadness, very relaxed Replied to her daughter: "It will be fine when you grow up. We are bitter first and sweet later." When I was in the big class of Dandan kindergarten,
was diagnosed with atopic dermatitis.
"Atopic dermatitis is a special clinical type of eczema. The condition is complex, recurrent, and treatment is tricky. 75% are mild and the condition can be relieved and controlled. A quarter of the patients are moderate to severe , There will be frequent attacks, and patients have to endure severe itching and extensive skin lesions.” said Professor Zhang Xuejun, director of the Institute of Dermatology, Huashan Hospital, Fudan University.
When he went to Shulan (Hangzhou) Hospital for consultation, Huang Qi had come here admiringly and brought Dandan to the clinic.
Dandan is the critically ill patient mentioned by Professor Zhang.
Before that, Huang Qi had taken her to Beijing, Shanghai, Nanjing, and Guangzhou. She had taken western medicine, used Chinese medicine, applied ointment, instilled intravenous drips, and consulted various expert doctors. All the doctors at
told her that this disease cannot be cured but can only be controlled.
She said: My baby has worked so hard.
Huang Qi knows that it is true, but it is difficult to accept. "My baby has worked so hard."
"Did you know? She doesn't know how to eat fish until now, because she has never eaten it since she was a child. She has tasted the taste of shrimp and liked it very much, but it was not until last year that she occasionally ate one. You don’t know how excited she is when she can eat a shrimp."
"She likes her family’s birthday the most, because there is a cake on this day and she can lick the cream."
"I will take her to Dudu City After playing professional experience, she made an ice cream. She held it and asked: Mom, can I eat it? I don’t know how to answer her. If she says yes, maybe after eating, she will get a rash and suffer physical harm. No, the other children are eating, only she is looking eagerly. Psychologically hurt."
Every morning and evening, Huang Qi has to apply medicine and moisturizer to her daughter, apply every affected area, every kind of medicine There should also be a gap between them, and this procedure takes 40 minutes at the earliest.
During the year, Dandan's most difficult season is summer, because she cannot be exposed to the sun or sweat. Exposure to the sun will cause skin peeling, sweating will cause itching. Because of this, Dandan cannot do many sports: neither badminton, football, or basketball. The little girl likes ball games very much, but she can only choose indoor sports like Ping Pong.
"The reason is very simple. There is air-conditioning in the room." Huang Qi enrolled a sports-loving daughter for a physical training class, but after a few classes, she stopped. "There is dust on the ground, and she always has to sit or fall down in class. The skin can't stand it."
, like many children, always likes small animals at a young age, but Huang Qi never allows her to approach. As soon as a friend's puppy gets close to her daughter, she quickly hugs it away.
"Other children, when scratched by a puppy or kitten, it will be obvious. Her skin, like this, is hard to find."
friend said she was too nervous.
"I don't want this either." Huang Qi is actually very tired.
Photo courtesy of Visual China
Her daughter’s skin is a barometer for the whole family
She said that her daughter is very hard, and she is not at all easy.
"Can you feel this feeling? Just wake up every day and see that your children are all over the body..." Huang Qi stretched out her hands and made a gesture of holding her head. The hygiene of
at home, she has to do it every day, the floor must be wiped clean, the bed must be sucked with a mite removal device, the fabric sofa is replaced with leather, which is convenient for scrubbing, and the daughter's clothes must be ironed with a steam engine before the upper body...
After Dan Dan went to elementary school, Huang Qi resigned. Dandan needs to be hospitalized every three to five, and Huang Qi's parents can't help her because of physical reasons. She can only take care of her daughter by herself. After
resigned, Huang Qi revolved around her daughter. She joked that her daughter's skin is a barometer for the whole family.
When Huang Qi was most crazy, she saw her daughter scratching her skin.
"I can't help but lose my temper at her." After losing her temper, she regretted it again, "So itchy, how can you hold back not scratching."
faced her mother's reprimand, most of the time, Dandan was a good temper. He promised never to scratch again, but sometimes, the little girl would go crazy: "I'm so itchy, don't let me scratch!"
Later, Huang Qi thought of a way: put Dandan's hands on gloves. This can reduce the damage.
This summer vacation, Huang Qi took her daughter to Chengde for a trip. The weather there was cooler. For Dandan, it was better than in Hangzhou. More importantly, in July, Huang Qi just took her daughter to Shulan (Hangzhou) Hospital for treatment. Professor Zhang Xuejun was in the hospital and she came here admiringly.
“For severe patients, if cleaning skin care, applying topical drugs, or antihistamine antipruritic drugs are not effective, biological agents should be considered.”
Zhang Xuejun formulated a treatment plan for Dandan, using drugs After that, Dandan's situation improved a lot. The best picture of Dandan on Huang Qi's phone was after this treatment.
This period is the most relaxed time of the year for the mother and daughter.
has been with the disease for so many years, Huang Qi is also learning to accept it peacefully, although it is really difficult. "I also thought about it, she might be like this all her life..."
Now, Huang Qi is no longer so sensitive and nervous, and occasionally asks Dandan to eat some ice cream or a small piece of cake, the excitement that
daughter is satisfied, Infected her.
"We will not give up, maybe one day we will find a special medicine."
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