[Old K], most people who know him call him that.
He is not [old], even looks a little immature. He is 13 or 4 years old, small. His voice is sharp, he wears black glasses, and he is slightly bookish. If you look carefully enough, you may find that his neck is smooth and there is no Adam’s apple.
He is only 155 centimeters tall, but he is actually 23 years old.
Old K is a patient with Kalman syndrome.
Adolescence has no secondary sexual characteristics development, internal and external genitals are naive, male patients have no beard, armpit hair, pubic hair, no sound change; Female patients have adolescent breast underdevelopment, no axillary hair, pubic hair and no menarche. This is the clinical manifestation of Kalman syndrome.
During the long puberty, this rare disease brought deep troubles to Old K.
01
During the hormone-emitting adolescence, [aliens] became the label that Old K labeled himself at that time.
At that time, the boys around him began to grow up suddenly, their voices became thicker, and thick body hair grew under their armpits. When swallowing, Adam’s apple rolled up and down. Occasionally, they could be heard secretly gathering together to discuss the topics of [spermatorrhea] and [erection] in a low voice.
All this is strange to Old K, who has not experienced these adolescent [agitation].
Once, he made an appointment with his friends to watch the movie “Late Niang”. When erotic images appeared, the friends took off their pants.
[farther than who! ] They showed smiling expressions and made adolescent explorations.
Old K on the side was a little at a loss. He was a little confused: [Why do they have sexual impulses? Why do my genitals look different from others? ]
Old K has no puberty, short stature, sharp voice, no armpit hair and no sexual impulse.
Throughout his high school days, his classmates also noticed his difference and joked as “sissy” and “girl”. He was extremely angry but helpless.
What’s more, some daring boys sneaked into Old K’s dormitory at noon. While he was reading in bed, the partnership wanted to tear off Old K’s trousers to see if he was a man or a woman.
Old K, who was already stunted, could only grab his pants desperately and shout for help. Only when Suguan arrived did several boys give up.
In order to cover up his [abnormality], Old K never dared to urinate in the urinal and could only secretly solve the problem in the opposite partition.
In addition to the bullying of classmates on campus, Old K also faces various inconveniences in life.
I once gave my younger brother a living expenses call, [at that time, it was still a voice recognition transfer.]
Old K recalled: [The machine could not recognize that my voice was male. I transferred the labor and cried to explain to the staff.]
[Even the machine doesn’t recognize my gender,] he said.
The adolescent old K has been living in inferiority complex. He wants an answer: [Why am I the only one different? ]
By chance, 23-year-old K came to the endocrinology department of the Third Affiliated Hospital of Zhongshan Medical University to see a doctor. What happened to him was the explanation-Kalman syndrome.
After the diagnosis, Lao K searched the Internet for relevant information. He accidentally discovered that some entries explain Kalman syndrome as [eunuch size] (male without sexual organs).
The word “eunuch” made him uncomfortable all over. He contacted the entry editor and explained to them earnestly: “what is Kalman syndrome? ]
Kallmann Syndrome (KS) is a hypogonadotropic hypogonadism accompanied by hypoolfaction or loss. The incidence rate of male is about 1/8000 and that of female is about 1/40000.
The patient has no secondary sexual characteristics during puberty and is in a [model] shape with short upper body and long lower body. The internal and external genitals are childish.
A small number of patients were complicated with cleft lip, cleft palate, cryptorchidism, deafness and color blindness. Abdominal B-ultrasound examination showed abnormal kidney morphology or single kidney, and olfactory nerve MRI imaging showed poor development or absence of olfactory bulb. A few patients are accompanied by congenital heart disease, etc. Very few patients are accompanied by psoriasis, epilepsy or mental retardation.
02
The diagnosis of the disease has given old K the answer to his doubts for many years. What is more gratifying is that the disease can be treated.
Every 3 days, Lao K will inject a drug called HCG (Human Chorionic Gland Promoting Hormone) to maintain hormone balance in his body.
The medicine soon came into effect. The tapering voice began to become hoarse and turbid, with long hair under the armpits, obvious changes in facial lines, pubic hair growing around the genitals, and beards growing on the originally tender face.
[Finally, even the genitals grew up slowly.] Old K said.
Six months after the treatment, the 24-year-old watched < < Late Niang > > again. Different from the 17-year-old, he experienced the feelings he had never had before-organ changes, temperature rise and flushed face.
The mysterious veil of [sex] was slowly lifted that year.
He met the girl who was moved. He still remembered the feeling of kissing for the first time, [blood was flowing all over his body, his heart beat faster, he was excited and very happy.]
Old K felt love at the moment of kissing.
The quiet life lasted for 2 years.
In March 2014, Old K went to the hospital to get the medicine according to the usual practice. The doctor told him that the medicine was gone.
Old K was confused: [How do you say there is no good medicine? ]
Without medicine, the quality of life of old K returned to the past. The beard did not grow long, the strong voice became tapered again, the muscles were weak, and the sexual desire decreased.
During the few months of drug withdrawal, Old K felt that every day was suffering. [I can’t accept this state of affairs, I feel very sad, and I feel that there is no hope in life.] Old K said.
Can’t wait to die, old K decided to visit the pharmaceutical company himself.
HCG (Human Chorionic Gland Promoting Hormone) drug materials come from pregnant women’s urine. [Pregnant women’s urine is difficult to collect and the cost increases.] The head of the drug company gave him the reason to stop drug production.
[It’s not the way to worry, you have to do some what.] A sick friend said to Old K, “Go hiking and call for drug production.”
As soon as his head became hot, Old K agreed.
In May 2014, Lao K and his party set out from Huludao, Liaoning Province.
Along the way, Old K publicized Kalman’s syndrome to strangers as he walked. Every time he went to a new place, Old K and his party went to the local hospital to communicate with doctors, hoping that more people would understand this rare disease.
In more than 20 days, they completed a 600-kilometer hike.
After a series of efforts, production of related drugs resumed in September of that year.
After this hiking activity, Lao K realized that the significance of hiking lies not only in calling for the production of cheap drugs, but also in the foreign exchange between patients and the popularization of Kalman syndrome.
Starting from 2014, Lao K and his entourage took hiking as an annual activity. At his ankle, he wrote a circle of numbers-every time he hiked, he would engrave the time and mileage on it. After five years of hiking, Lao K and his entourage appeared in Inner Mongolia, Yunnan and Hainan.
03
Old K was not originally called Old K, his name was Pan Feifei.
In 2012, Pan Feifei initiated and established [Old K’s Home], a mutual welfare organization for patients with Kalman syndrome.
In the communication with the patients, Pan Feifei found that although many patients had received treatment, they were still unwilling to accept themselves.
[Due to the disease, some female patients have no way to give birth. In order to complete the task of carrying on the family tradition, one must also look for doctors and drugs everywhere to obtain reproductive function.]
[Male patients often feel inferior. Although they have recovered some secondary sexual characteristics after treatment, they are still distressed that they do not have Adam’s apple, the size of sexual organs is not large enough, and muscles are not as powerful as normal men. They dare not fall in love, have a first-time experience, or get married.]
[Who are we? Men or women? [Pan Feifei found that what really tired them was the social stereotype of men and women.
[In the dual world of men and women, there is no room for us. We are neither men nor women.] Pan Feifei once said in an interview with the media.
[Can’t Adam’s apple fall in love and get married without beard? ]
[If you cannot have children, you will be criticized. Is it incomplete? ]
These thoughts have been hovering in Pan Feifei’s heart: [If Kalman syndrome is only a physiological disease, how do you explain what happened to the patients? ]
[Determining who we are, who we want to be with, and whether we have children or not should not be just a social definition. Why can’t we challenge the traditional gender perspective and become one of our own and one of our own? ]
Pan Feifei believes that only by allowing patients to accept gender diversity and breaking the social stereotype against men and women can they better accept their bodies and themselves.
[After diseases are labeled by society, we often ignore the existence of independent individuals. Our essence is human beings, everyone must be different, and the world is beautiful and colorful because of different things.] Pan Longfei said.