By YaoBaoYu（English Name：Tom Yao）
All life is different. Everyone is unique. Unique individuals interweave to form a colorful human society. Everyone has his own story, there are too many unknown opportunities and challenges in the journey of life.There are good times, beautiful sceneries and there also are difficulties and rough.Encounter difficulties is unavoidable in the life, no one knows what difficulties they will encounter, but how to face the difficulties, we can choose the attitude.For the people living with Duchenne worldwide,DMD is the difficulty we are facing together.Positive and optimistic, never give up is very important, not only related to the reality, but also related to the quality of life.Difficulties are like mountains,you can't tramp over mountains and through ravines until you climb bravely！
I come from China.I am an adult DMD(meaningless point mutation) patient and I am a psychological consultant. Over the years, there have been many experiences and feelings. I'm glad to share through this article.
I was born in 1992, when I was 7 years old,I was diagnosed with DMD.At that time, there was little information about DMD and daily management and maintenance. I didn't use glucocorticoids therapy (personal choice), we just heard that rehabilitation training might be helpful. I started to stick to rehabilitation training.
In order to ensured rehabilitation training, I chose to study at home, when the exam time,I went to school for the exam until I graduating from university. These years I have encountered many difficulties. Although very hard, it was not in vain. After seeing my physical condition, Dr. Dai Yi,(a neuromuscular doctor at Peking Union Medical College Hospital,The head of TREAT-NMD International Patient Database in China and the head of CMT International Patient Database in China) ,he described me in an article, "When I saw the patient, he did not have any joint contracture、foot deformity or scoliosis, which was never seen in adult patients with DMD. Such persistence, such effect, even in the foreign patients group is almost invisible, belongs to China's rare patients and his family to create world miracles."
Persistence is the key
After I was diagnosed with DMD. For rehabilitation training, my father didn't want me to go to school, and he was resolute. I vaguely known that I was different from other children, but I wanted to study like my classmates. I chose to be stubborn that time.My father refused me to study, so I secretly to study.Every day after rehabilitation training, my mother accompanied me went for a walk on the way to school,waited my classmates to asked the homework. Before my father went home, I finished my homework quickly, and then hid it. I cherished the opportunity to learn.Later, through the efforts of my mother, I was allowed to take reguly examinations to school, but at ordinary times I did rehabilitation training and study at home. That time the persistence changed the way of my life, let me known that persistence is very important, opportunities need to be created.
Since then,I've been doing rehabilitation and stretching exercises. Although it is very hard, I never want to give up. We consulted many healthy people's fitness books to learn that the different movements can exercised which parts of the body's muscles. Then we adjusted or simplified the training items according to my athletic ability. With the growth of my age, the athletic ability changed and the training items were constantly adjusted. Besides doing rehabilitation training, I keep stretching and massage every day.
More than ten years are like a day, my mother helped me do rehabilitation training and stretching exercises. When stretching the achilles tendon,my knee was under my mother's armpit,my mother's arms worked hard. My mother's skin became blue and purple, and her arms ached. Even in the coldest winter, she would sweat heavily, but she kept doing it. This persistence inspires me.
Through years of perseverance, I began to sit in wheelchair when I was 17 years old, and the sweat I had spent over the years brought me good body shape and quality of life. Dr. Dai Yi said: "I am very surprised that without glucocorticoids therapy, he also can get such a good shape only by rehabilitative training. Such rehabilitation effect is beyond the reach of professional rehabilitation doctors, so we can see the depth of efforts of them."
Grasp the Nowing
Remember, In my middle school stage, I can say that it was the hardest period,more subjects,more learning pressure. And I had to do 5-6 hours of rehabilitation training every day. The learning time was very little and fragmentary, and I could only read books by myself,so I was worried about whether I could understand knowledge completely and accurately . For a while, I felt very anxious and helpless. I hope to study, I hope that like ordinary students, they had enough time,healthy body, they would have more choices and freedom in the future, but for me……
The fog ahead, where is the road, I felt confused.But I told myself to grit my teeth, stuck to it. Through perseverance, I realized that only lighting the lamp of heart can dispel the fog of the way.So that I found the direction. In rehabilitation training and learning, I experienceed concentration and steadfastness. Although training was very tired and muscle aches, I experienceed strength and gave me energy during sweating. Even if learning time was very little,I grasped it with my heart. Learning made me more concentrate and stimulates my interest.
I were no longer anxious and confused,on the contrary I could better faced the reality, went forward courageously, I admitted into university. During the university period, I have been continuously awarded the title of inspiration star, I have been admitted to Graphic Design Engineer Certification, National Psychological Consultant Professional Certification.And before graduated from the university,my graduation thesis was rated excellent thesis.
Face with difficulties and confusion, grasp the nowing is very important. It can give you the power to face reality. Every person has different life, different difficulties and their own happiness. As long as you don't give up, go with your heart, take one step, take another step, divide big difficulties into small ones, and experience and cherish the beautiful in the life in the process of overcoming difficulties.
Forward with Love
In my middle school stage was also my mother's the hardest time. My parents all worked in electric power plant.My father worked in the daytime, my mother often worked on the night shift,and took me to rehabilitation training in the daytime, took care of all diet and living. My mother was very hard at that time and had very little time to rest. But my mother never complains, was always positive and optimistic, and often encouraged me. I deeply felt the power of love and felt love and responsibility. These give me a lot of motivation.
In addition, although I study at home, I feel that I have never left the collective. At different stages, many good teachers, classmates and friends encouraged and supported me. Every time I went to school for an exam,usually I got a good exam results, which was approved and encourage by my teachers and classmates. It gave me more confidence.
These let me feel very lucky and grateful. Promote me find a direction, have a deeper understanding and experience of life. I am not alone in the fight, love and responsibility on the shoulders, line the own way.
Never give up, forward with love. Our potential exceeds our imagination.Not only can we promote our own growth, but we can also realize our own value and contribute to society. I want to convey love and positive energy with more people through practical actions.
After graduating from university in 2016, I began to do psychological counseling and related work in ZHIAI DMD Care and Support Centre,Beijing, and set up counseling groups.Now include more than 1200 families.I usually pay attention to the research and development of drug and innovative equipment, no periodically translate and share foreign related content, so as to facilitate families of patients to know the latest news.
DMD is a together problem facing us. DMD is regardless of nationality and race. Countries with large populations have more large numbers of patients.To overcome Duchenne as soon as possible, patients, scientists, clinicians, caregivers, regulators and payers all over the world need to work together and cooperate. We have reason to believe that we will conquer DMD,Because from ancient times to the present, human beings grew up in the process of overcoming difficulties,we have the quality of fearless difficulties, pioneering and enterprising.
Against the wind, we should more dare to spread our wings!Our DMD families persevere together, grasp the nowing, never give up, and forward with love. With the progress of gene technology,another great era will be opened,we believe that tomorrow will be better.Thanks to all the people in the world who for fighting against to overcome rare diseases!