17 April 2022 is the 34th World Hemophilia Day. The theme of the World Hemophilia Day 2022 is "For All – Solidarity, Cooperation, Policy Support, Common Development". In the past ten years, what is the survival and development status of hemophilia patients in Guangzhou? What kind of attitude do they have towards life and their pursuit of the future?
The "Rehabilitation Alliance", a music and film and television production team composed of hemophilia patients in Guangzhou, with the support of the Guangzhou Charity Association, has written and directed a public service publicity short film "Building a Dream future" to see the world from the perspective of hemophilia patients and tell everyone the answer: Although they are in difficulty, they still firmly love themselves and life, actively explore employment paths, and persistently pursue their dreams. On World Hemophilia Day, reporters approached to learn about their stories.
Ten years together
Accompany patients with hemophilia to build a dream of the future
Huang Jiancong was diagnosed with hemophilia at the age of one, and as long as he collided slightly in life, there would be bruises on his body. Looking back at his schooling stage, Ah Cong was not in school almost half the time, because once bleeding occurred, he often needed to take medication immediately, and the recovery cycle was much slower than normal. At its worst, daily living requires a wheelchair and crutches.
Relevant data show that hemophilia is characterized by impaired active thromboplastin production, prolonged clotting time, a slight post-traumatic bleeding tendency throughout life, "spontaneous" bleeding can occur in severe patients without obvious trauma, and 85% of patients are missing coagulation factor VIII. Long-term repeated bleeding of muscles and joints can cause disability, severe bleeding and even death.
But Huang Jiancong told reporters that if hemophilia patients can be injected with drugs for adequate preventive treatment, even patients with severe hemophilia A can live a life almost the same as normal people.
He said, "I remember that my physical condition is really getting better and better, since 2016, the Guangzhou Charity Association and the Hemophilia Diagnosis and Treatment Hospital cooperated in the 'innovative one-stop settlement model', reducing various complicated processes, saving a lot of time for prescribing drugs, and since then prescribing drugs has basically not affected our daily work and study, making our medication more stable and standardized." ”
Now Huang Jiancong sings, records, music production, piano tuning, hosting, photography, not only to live his own life, but also to pay attention to rare disease groups with his partners to help more people live their lives.
As early as 2016, the Guangzhou Charity Association had begun to explore a series of support actions for patients with hemophilia. Since April 26, 2011, the Guangzhou Charity Association and the China Charity Federation have jointly launched the "Life Extension - Hemophilia Children Assistance Project" to provide drug assistance to patients with hemophilia.
On March 26, 2015, the project was upgraded to expand the scope of assistance from children to adults, and the drug rescue model was upgraded to special fund assistance. In January 2016, the "one-stop settlement model" was launched to further optimize the rescue procedure, which not only reduces the pressure on people suffering from hemophilia to pay for treatment, but also realizes that the assisted patients "come and see, go with the end", effectively reducing the rescue links and improving the rescue efficiency.
At the end of 2017, in order to further strengthen the comprehensive assistance to the hemophilia patient group, the Guangzhou Charity Association launched the "Hemophilia Care Plan" to provide assistance in genetic screening, orthopedic surgery and rehabilitation treatment, further advocate the model of pre-rescue for patients, especially the prevention of major diseases, and promote the improvement of the level of prevention and treatment of related diseases. As of March 2022, the project has rescued more than 27,000 patients, and the amount of assistance has reached 76.2929 million yuan.
Li Zhen, director of the Rescue Service Department of the Guangzhou Charity Association, said: "What touched me most was that this project unites all the forces of the government medical insurance department, health care institutions, charities, caring enterprises, and patient groups themselves, and unites and coordinates with each other, not only so that the medication of hemophilia patient groups can be effectively solved, but also explores a good model for the rescue of other rare disease groups." ”
Out of the sickness
Explore self-employment
Nowadays, hemophilia has been faced squarely, and the popularity of drugs is gradually improving the quality of life of patients. However, some hemophiliacs, especially those with severe disabilities, still have many difficulties in employment and future development due to the limitations of their own objective factors. "The problem of medicine has been solved, hemophilia as a chronic disease can be controlled, but coming out of pain does not mean that the survival problem of patients has been solved, many patients have not obtained good educational opportunities due to the limitations of objective conditions in the early years, and have been entangled with pain for many years, and there is no clear career planning." Huang Jiancong said.
In 2020, Huang Jiancong, the founder of the Liwan District Rare Disease Care Center, Huang Zhiming, and a number of rare disease patients invariably opened the road of employment support for rare disease groups. "Uncle Fei (Huang Zhiming) is a patient with progressive muscular dystrophy and is also a rare disease patient, the circle of friends in this field is not large, and everyone actively participates in various rare disease advocacy activities, so they have known each other since they came and gone."
Huang Jiancong said that the rare disease group is too "niche", and if you want to promote the occurrence of change, you must bring together the strength of all parties, just in time, everyone feels that it is very important to promote employment, so it is a hit.
"After stumbling all the way, we finally found that we must invest in learning, work, and society to overcome the disease, so with our work 'Smart Employment Chain'." Fei Shu said: "We are committed to the public welfare, training, employment of the three synchronous into a smart employment chain project, simply teach people to fish is not enough, patients because of the limitations of physical disability, can not be qualified for most of the manual labor positions, some patients from difficult families, can not afford the high tuition and equipment purchase, can not become technical workers through learning." ”
Eventually, the Rehabilitator Alliance team found the job that best suited the population of people with rare diseases, including hemophilia: video production and peripherals. Video production involves copywriting, shooting, execution, collaboration, graphics, post-production, training, etc., and can be completed offline or online, regardless of geographical restrictions.
As long as you are willing to make efforts and insist on learning, you will soon be able to graduate in the "employment chain", and the "Rehabilitation Alliance" team not only provides learning and practice for patients, but also arranges orders for them to solve the income problem of sustainable development! ”
Huang Mingxi is not only a beneficiary of the Guangzhou Charity Association's Hemophilia Assistance Project, but also a successful case of the "Smart Employment Chain" project. Huang Mingxi, 18 years old this year, is a severe patient with hemophilia A, when he was a child, he fell and caused cerebral hemorrhage, at that time there was no diagnosis of hemophilia, the doctor did craniotomy for him after causing postoperative cerebral effusion, need to drain from the waist to cause lumbar bleeding, resulting in lifelong paraplegia. Huang Mingxi likes to sing, likes games, likes to make videos, and hopes to open a film and television company in the future, have a team of her own, and help patients in need to complete their dreams!
He said: "I am still full of hope for life! I am good at making game videos, and now in the support of the employment counseling project, I learn a more solid video production course, and I am currently in the internship stage, hoping to show you one video after another I have made. Regular medication is really important! Coupled with the guangzhou charity association's rehabilitation treatment for hemophilia patients, pharmacokinetics and other assistance projects, I feel that my body is becoming more and more stable and stronger, and I do not have the fragility that everyone remembered in the past. ”
【Patients say】
Huang Jiancong: "I hope that everyone will not only survive, but also choose their own lives." Only in this way can we get out of the shadow of disease. I want to say to more patients that our present is your future! We implore all sectors of society to pay more attention to the hemophilia group and give them more employment opportunities, and also ask patients not to be defeated by diseases and disabilities. ”
Text/Guangzhou Daily, Xinhua city reporter: Su Zan, Yang Xin
Photo/ Guangzhou Daily, New Flower City Reporter: Mo Weinong
Correspondent: Wang Menghua
Guangzhou Daily New Flower City Editor: Lin Chuanling