On April 13, 2013, standing at the gate of the Beijing National Development and Reform Commission (NDRC), yuan nana carrying "medicine will shut down because of cheap; Life can't, because there was no medicine and stop "sign" advocacy of HCG raw grain to resume production.

"Do you know messi?" She asked me.

"Of course."

"He is, growth hormone deficiency patients around the age of 12 when diagnosed, because there are very good treatment, so now a full recovery, also a wife and son". She said.

Smile in her mouth up, "although I don't have a macy's so lucky, grow to normal height, but I have a healthy and lovely son, and a painful I, spoil me lover", she told me of happiness.

"His life happiness, want to let more fellow happiness". The patients were misdiagnosed, let her feel compelled to let people know about this disease. "Always have a person to stand up and do it", she told reporters with a smile.

At that moment, her smile is like a light into the world of "pocket".

She, is the home of "pocket", yuan nana.

The first time I met her was at the welcome dinner of the "Fourth National Porcelain Doll Congress", and she sat at a table for dinner. The popular boboto, big eyes, especially laughed. During the meal, I kept picking dishes for the little friend sitting next to me. Whenever a dish came up, she always asked the partner next to me to eat this? Is it enough to get the dish? Keep turning the glass disc to say hello Everyone eats food and cares for everyone like her sister.

If she hadn't told me that she was a patient with growth disorder and growth hormone deficiency, which is what we usually call a "pocket", I wouldn't have imagined that she is also a rare patient, because she looks like she is a little shorter No features are displayed.

She is Yuan Nana, a patient with growth hormone deficiency, and the promoter of Beijing's "Pocket Man's Home". Because he had been misdiagnosed before, he was less than 1.2m tall at the age of 16 and was not diagnosed at Peking Union Medical College until the age of 16. After a course of treatment, it was 5-6cm taller in three months. If treated before 16 years old, Yuan Nana will be even higher.

Due to the financial conditions at home, she gave up after the first treatment and did not receive a second treatment until the age of 26. "Because I didn't develop the second sex until I was 26 years old, at that time I started to be very resistant to boys' body hair, throat knots, etc. If I didn't choose treatment at this time, I would never be able to get married and have children like ordinary people." Yuan Na Na said.

Speaking of the second treatment, Yuan Nana introduced: After I went to work, I had a chance to go to Shanghai for a business trip. I went to the general agent of the growth hormone medicine and drug maker, and told them about my situation, and told them that I had a good treatment at first. Can the medicine find a way to make it cheaper or give me something? The results are special It went well. The person who received me was the sales manager of that general agent. He asked me to take a check. The check gave me five months of medicine. "So I'm lucky," Nana said. At this time, the treatment is not as effective as a child, and there are many side effects, such as swollen eyes, knee pain, etc., which will even affect work. But slowly, I started to have a second sex development, the height reached 1.39m, and our patients over 20 years old were treated again, and the chance of growing taller was very small. "

"Although this type of patients does not suffer from illness, if they have not been treated, they will stop developing like a child. Their height is only about 1.3m, and there are no signs of secondary sexual characteristics. It is very difficult to get married and have children. It can also be said that it is impossible. After 30 years of age, girls age like menopausal women. They generally age quickly, wrinkles gradually increase, and mood is not good. As aging affects life expectancy, I have not seen 50 so far. "Pocket people over the age of", said Yuan Nana.　

Yuan Nana used to work as a network editor in a hospital. She often sees many patients like her who come to the hospital for diagnosis and treatment. There are many treatments that are relatively late. Those who cannot be treated or cannot afford the cost of treatment after diagnosis, and have been misdiagnosed Patient. Constantly seeing this situation, Yuan Nana's pressure is particularly heavy, because she also suffered from being misdiagnosed, so she thinks she has a responsibility to stand up and do something for her patients, so that more people understand and understand this. This kind of disease is the original intention of Yuan Nana to set up a pocket house. "I wonder if I can build a website so that people who have compassion for the disease can find support and warmth."

In this way, the "People's Home" public service website was officially launched on May 1, 2010. On this platform, patients with growth hormone deficiency from all over the country have a sense of belonging. Many patients exchange ideas here and ask for medical attention. Medicine, mutual friendship and warmth. In June 2013, "Pocket Man's House" passed the verification of Beijing Municipal Dongcheng District Civil Affairs Bureau. It is a non-profit public welfare organization engaged in public welfare and non-profit social work. It is committed to the development of other dwarf groups such as growth hormone deficiency. Care and assistance services to promote the understanding and respect of dwarf groups by society and the public, eliminate discrimination against them, safeguard the group's equal rights in medical, education, employment, and care, and promote dwarf groups such as growth hormone deficiency Social security related policies for the vulnerable groups were issued. Today it has 2,000 active members and 500-1000 daily visitors.

There are five major sections on the Mini-Person's website. First, counseling services: telephone and online consultations on patients with growth hormone deficiency and their families, including drugs, policies, education and psychological counseling; second, care and assistance: development Medical and life support work for patients with growth hormone deficiency; 3. Policy advocacy:Promote the government to introduce health insurance policies for patients with growth hormone deficiency; 4. Information exchange: Establish a platform for communication and mutual assistance between patients with growth hormone deficiency and their families; timely Release of various growth hormone deficiency information; V. Investigation and research: assist hospitals and other related institutions to conduct surveys and research on growth hormone deficiency groups. In 2013, the first "Pocket Survival Survey Form" was collected in China and collected 316 copies. valid questionaire.

After the website was established, in order to reduce expenses, Mr. Yuan Nana's Mr. Chen Lizhang served as the "Director-General", and he was responsible for purchasing the server, operation, technology, and network management. Yuan Nana undertook the tasks of "foreign liaison" and "psychological consultation". My friend Wei Zeyang was forcibly named "Deputy Director-General" to answer the confusion in the treatment for netizens.

The rent for the "Pocket Man's House" and the hosting of events all require funding. Therefore, the operation of the website is much more difficult than imagined. There are also no channels for fundraising and lack of funding sources. At present, we are trying to solve the funding problem by expanding fundraising channels, finding fixed booths, organizing charity sales, improving project design, and applying for administrative related funds. In addition to funding, there is a lack of human resources. At present, there is only one full-time staff member and one part-time staff member, which cannot effectively ensure communication coordination. Then there is the issue of publicity. At present, the publicity of the organization is not enough and the popularity is not high.

Da Zhang also tried to seek help from relevant departments, and Yuan Nana also found the Disabled Persons' Federation for help. As a result, they were discouraged. Some replies said that the website must pay the start-up funds and find a higher-level unit to host it, in order to give "identity"; some require them to build the website before considering support; some NGO organizations I have no legal identity and no guarantee of funds, let alone reach out for assistance.

For a while, the website was alive and well. Da Zhang began to work overtime madly to make money to support the "Pocket Man's House", and Yuan Nana also became a veteran of children's photography.

"Until now, the biggest difficulty has been funding." The initial start-up funds of the "Pocket Man's House" are supported by big chapters, including rent and staff salaries. At present, the operating funds of the "Pocket Man's House" mainly come from the support of "Porcelain Doll Rare Disease Care Center China Rare Disease Development Center" and "Anhui Yihe Public Welfare Service Center". A small amount of funds are donations from the public.

In order to maintain the operation of the "Pocket Man's House", Yuan Nana and Da Zhang used to borrow money to maintain it. She had the idea of giving up public welfare in her mind. However, she only needs to think of her original intention to devote to public welfare. Can't wait, because they may miss the best time for treatment, so she firmly told herself: "Difficulties can't stop me from doing public welfare"!　　

Since 2010, the “Pocket Man's House” led by Yuan Nana has provided counseling, psychological counseling and other services for about 1,000 patients with growth hormone deficiency, while helping 6 pocket men with the cost of a course of treatment. It is understood that the cost of a course of treatment is about 10,000.

In addition, the hotline answers 200 people / year, the network answers 300 people / year, and Xiehe Hospital's Green Channel assists in registering 50 people / year.

In 2014, under the joint efforts of the "Pocket Man's House" and the "Old K House", the NDRC contacted the manufacturers to resume production of the discontinued drug chorionic gonadotropin within six months.

A few days ago, the "Pocket Man's House" is going to send a letter of advice to the Ministry of Human Resources and Social Security to submit suggestions for patients with growth hormone deficiency regarding the inclusion of the "recombinant human growth hormone" used for injection in the national medical insurance drug list.

Growth hormone medicines can make patients with growth hormone deficiency well treated. The best injection every night before going to bed is because this time injection can mimic growth hormone secretion. This medicine is a prescription drug, one dose per day, the dose is determined according to weight, a course of treatment is about 3 months, about 10,000 yuan, the effect can be two or three centimeters long. The optimal treatment time is between 3 and 30 years old, "but the specific situation depends on the bone age, it is useful before the bone age is closed." "Because the price of this medicine is unaffordable for an average family, then what should we do as a group of us? High treatment costs, maybe only the country is the biggest one for our patients." It is understood that at present In the country, only "Shanghai" and "Hangzhou" enjoy reimbursement for "recombinant human growth hormone" for "pocket people", and the reimbursement rate is 50%.

"We hope that in the future, every patient with growth hormone deficiency can be given medicines and used as medicines. For patients with growth hormone deficiency, submit a proposal for the inclusion of the drug used for injection" recombinant human growth hormone "in the national medical insurance drug list. Regardless of whether the final result can be reimbursed in full, or reimbursed 10,000, as long as this reimbursement can help this group, I have to work hard! "

"We are the first and only non-profit organization registered to help pocket people," Yuan Nana said proudly.