Shenzhen Paopaojiayuan Neurofibromatosis Care Center (SZNFCC) is an organization of NF patients in China. Its developing concept is to build a communication platform for the NF community in China, to promote medical research on NF in medical institutions and research institutes, to promulgate the state to introduce NF group security policy and to popularize the public's understanding of NF. It has always been committed to creating a community full of love and warmth, light and hope, for Chinese NF groups. SZNFCC kindly shared the story of brothers Yang Jun and Yang Chao, two men living with NF2.
Brothers in the tribulation of fate
This is a pair of bitter brothers. Their mother died young and their father left home without hearing from him. The elder brother was forced to drop out of school. He started working outside at the age of 16 and became a manager in a KTV a few years later. In 2014, the elder brother studied while working, and through hard work, he got a college diploma from a university in Xiamen. If he didn't get sick, he would take the self-study examination for a bachelor's degree. Life seemed getting better and ordinary.
Unfortunately, in 2014, the little younger brother was diagnosed with NF2-related schwannomatosis (NF2) and underwent surgery for intracranial vestibular schwannoma and optic neuroma. He was blind in the left eye and had impaired hearing. In 2015, the elder brother Yang Jun suddenly became deaf and couldn’t hear anymore. He went to the hospital for an examination and was also diagnosed with NF2.
The elder brother is Yang Jun, 34 years old, and the younger brother is Yang Chao, 30 years old, from Dazhou, Sichuan Province, China.
“We are from a small mountain village in Dazhou, Sichuan Province, China. We were supposed to live an ordinary life, plain and happy.”
“Unfortunately, since I was 5 years old, life has lost its balance. My mother began to experience unsteady walking, hearing and vision loss, and gradually became paralyzed. Because of the limited medical conditions at that time, NF2 was not confirmed until my mother died, and was only diagnosed with rheumatism! Then my father lost contact after 4 years of working outside (according to neighbors, he died of a traffic accident). A complete family became fragmented. In the end only we two brothers and our grandma were left to depend on each other.”
“What's more cruel was that fate did not show any mercy to us. In the winter of 2014, my 21-year-old brother Yang Chao suddenly suffered from hearing loss and lost feeling in both legs. He was diagnosed with NF2. Before long, I can't hear clearly while working outside. I was diagnosed with the same disease NF2 in 2015. After the diagnosis, because we didn't understand the disease, we performed several surgeries successively.”
“However, during the re-examination period from 2017 to 2019, multiple tumors and neuropathy appeared in our spinal canal, which reached the point where the local hospital could not operate, and limb movement became more and more difficult. At that time, my hearing deteriorated and soon completely lost. The two of us traveled to many hospitals across the country, and the treatment plans given by many doctors were similar:
wherever there is a tumor, we can cut it. But after cutting it, it may recur in other places, repeating itself, a vicious circle …
Every time we hear such an answer, we feel extremely depressed and uneasy in our hearts! Why is suffering always chasing after us? Why do all the misfortunes befall us?”
There is warmth in the world, and I will no longer walk alone.
“Later, by chance, I came into contact with the China Shenzhen Paopaojiayuan Neurofibromatosis Care Center (SPNFCC), where I received love and encouragement. Through communications with other patients and friends, I gradually learned more about NF2. Although currently there is no complete cure for NF, it is known that several innovative treatments for NF2 are being explored. The most important thing is that from now on, my brothers and I are no longer alone. In addition to the patient community, help and care from all walks of life have also made us stronger. Illness and suffering will spare no one —since fate has chosen us, can we also actively fight with our fate? This time, I decided to do something for myself, for my younger brother, for the society, and for the NF2 group.”
“My vision has been severely reduced due to facial paralysis and exposure keratitis caused by the disease. In 2021, I learned from NFCC that the team of Director Wang Chengyuan of China-Japan Friendship Hospital in Beijing has rich clinical experience and successful cases in the treatment of facial nerve injuries. I had a facial nerve transplantation operation at the hospital at the end of the same year. My eye closure problem gradually improved and most of the facial expressions were restored 6 months after the operation on the affected side.”
“My younger brother with a more serious condition undergone multiple tumor resections in the neck, chest, and lumbar spine, and his condition has been relatively stable. After three months, he can buy vegetables and cook. In this case, I still insist on sharing the stories of us through various channels, and make an appeal for the patient group! And when someone needs a donation to support, we don't hesitate to do our part to encourage each other.
“I registered for organ donation on the official website of the Red Cross Society of China in 2017. I hope to contribute to this society and the research of NF2 group through body donation and organ donation!
“My biggest wish for the rest of my life is to regain my hearing and ability to work through ABI implant surgery. I'm the elder brother. Regardless of my physical condition, I must take good care of my younger brother.”
The real strength is knowing that there are difficulties ahead, but still moving forward firmly
“Life itself is meaningless. Only after quenching and suffering can it have a meaning. It is vitality, fearlessness, unyielding, with tears and smiles, sinking and cheering. With all these, even an instant will surely become eternity!” —Yang Jun
