ISeek Cultural Center is a public welfare organization initiated by patients with PAH (pulmonary artery hypertension), which aims to provide support and service for people with invisible disabilities as PAH.

June 20th to 22nd, 2014, the 11th international pulmonary hypertension science conference was held in Indianapolis, the state capital of Indiana, which is a famous car racing city.  Therefore, conference organizer designated “Racing toward the road of healing” as the theme of this event.  This is the voice of two and half million patients worldwide and also the common goal of over 60 pulmonary hypertension patient organizations striving for.  Of course, every one of our patients, their families, health care professionals, volunteers, and those engaged in this welfare are well aware of achieving this goal is just like car racing, full of challenges.

In the evening of June 18, at the welcome party held for leaders of pulmonary hypertension organizations worldwide, representative Huan Huang of Iseek organization started with sharing his own illness, what has gone through in founding Iseek organization and the progress achieved in the past three years.  Then followed up by similar experience sharing by organizations from South Africa, Israel, Brazil, Mexico, Saudi Arabia and other countries.   "When my mother was diagnosed with this illness, I know only two such patients in Brazil.   I know if I do not do it, nobody will",  "In South Africa, we have only two treatments available for this disease",  "I was diagnosed just a year ago.  This is my first time to participate in International Pulmonary Hypertension Science Conference.  I am very happy and I will bring back your stories back to Mexico ".  Every face in the conference is new to us and yet their stories are so familiar.  Although we are unable to communicate fluently in English or Spanish but we feel the understanding and caring from an old friend.  "Hey, how is your daughter ?", "She is fine, and you?".   Like Iseek organization, most pulmonary arterial hypertension organizations are founded by patients or their families.

Iseek Cultural Center is a public welfare organization initiated by patients with PAH (pulmonary artery hypertension), which aims to provide support and service for people with invisible disabilities as PAH.

On March 9, 2014, the staff of Iseek and 3 volunteers came to see children with PAH and their family members, bringing clothes donated by some volunteers. After stepping out of the bus, we saw a girl leaning on her mother’s shoulder. The girl was Ding Yuxuan. She suffered from an episode of suffocation in 2011. During her rescue, the lack of oxygen damaged her brain and gave her cerebral palsy. Since then, the girl has had to lean on her mother. Apart from taking medicine for PAH, she has had to accept acupuncture therapy.  

The room is small, but warm. Yuxuan’s family comes from Anhui. Her father works for a company and makes a salary of 3000 yuan a month. Her father has to work overtime in order to earn more. Her mother has no job, because she has to take care of Yuxuan. 

Yuxuan’s mother told us, “Though we are living away from our hometown, we still have a warm home. If we stay together, we are a family.”

Iseek Cultural Center is a public welfare organization initiated by patients with PAH (pulmonary artery hypertension), which aims to provide support and service for people with invisible disabilities as PAH.

On November 16, 2013, together with Beijing Iseek, FYSE, an organization doing social enterprise research and training went to the classroom of Beijing 101 Middle School. They brought public lessons on pulmonary hypertension (PAH).

Huang Huan, the person-in-charge of Iseek shared his process of diagnostics and treatment of PAH in fluent English. He wanted to use his story to explain what PAH is as well as the difficulties that a patient has to face. The students got to know that the illness is more than a medical problem and is also related to the patients’ families and medical organizations. Meanwhile, people with PAH face social problems in school education, employment and marriage. 

After the introduction for the “Blue Lips” activity, the students were inspired and started to act. Some of them painted their faces as a cat and some of them drew a blue loving logo on the face. Some students even painted their eyelids blue.   

The illness may seem far away from the students. They may not be able to feel the pain brought on by PAH, but now the word PAH will always be in their mind. If anyone mentions blue lips in the future they can all say "I understand." 

Let's care for people suffering with PAH together and unite with blue lips. 


Original article written by Zhe Fan, translated by Maggie Li, Edited by Yanyan Zhang

Iseek Cultural Center is a public welfare organization initiated by patients with PAH (pulmonary artery hypertension), which aims to provide support and service for people with invisible disabilities as PAH.

[Being acquainted with each other]

Zi Ling’er and I rented an apartment in a suburb of Shanghai. We visited the doctor and took medicine every Saturday.  Zi Ling’er is outgoing and made some friends. I got to know many friends through her. Wu Ji, my boyfriend, is one of them. 

Wu Ji is introverted and shy. Most of his thoughts are passive and melancholy. He was diagnosed with heart disease shortly after he was born. We chatted with each other on the internet every day. Day by day, I got to know him. He likes rock and roll music. He also likes watching movies. He was in a band and played drums when he was in university. He can play the guitar. He said his mother had been taking care of him for the past 20 years. He does not have any regrets except that he has never been in love. He said he would like to experience being loved or loving someone when he is alive. Due to his health problems, girls would not love him. 

Days passed and we kept chatting everything via the internet. One day, he told his mother he would go out and visit Zhouzhuang. He would drop by the Chinese medicine doctor and see me. We agreed it was a blind date. 

When we met, we liked each other. Though he is reserved and shy, he held my hand. I was thinking: this is what love between two patients looks like. He is in Beijing and I am in Hubei. We are in poor health and we might see each other once a year. Our means of contact is on internet or phone. He asked me if I could accept long-distance love. I thought if we have computer, telephone or video, we will be OK. We do not have to see each other all the time.

We told our parents about our love, and they have no objection. We are in love.

After he stayed in Shanghai for a week, he went back to Beijing. His mother had allowed him to stay for 3 days. On the train back to Beijing, he sent a text to me and said he was reluctant to leave. He was thankful that I let him know what it felt like to love another person. He would come to Shanghai again and see me.

It is cold in November in Shanghai. I could not manage going between the suburbs and downtown for the treatment once a week. I had to go back but I knew there was no heat in Hubei. He hoped I could spend winter in Beijing. When we chatted, he would tell me how comfortable it was to stay in the house during winter time in Beijing. He said he would take me to eat something tasty and we could go places for fun. Furthermore, he would like to take Chinese medicine. If I was in Beijing, we could take medicine together. He said he would pay for my traveling expenses. I thought he was adorable, just like a big boy.

I called my parents for their opinion. They agreed and respected my intention. His parents agreed to accept me to live with them and seek Chinese medical treatment. I really appreciate my parents. Thanks to them, we spent a short but happy time together.

Iseek Cultural Center is a public welfare organization initiated by patients with PAH (pulmonary artery hypertension), which aims to provide support and service for people with invisible disabilities as PAH.

My name is Abu and I am 31 this year. As a normal woman, I would have a job and a life of my own. But I am a PAH patient, so living like a normal person is a dream for me. I was diagnosed with PAH when I was 14. My twin sister was also diagnosed with PAH at the same time.  

To seek treatment, my parents took us to many hospitals around the country, which used up all of our savings and put us in debt. Doctors simply told us that current medicine could do nothing for our illness. We had to go back home and waiting for further developments.

I still remember when we were waiting for our parents in the corridor of the hospital. People passed by us with eyes full of pity, whispering, “they are so young! The doctors say they only have three years.” Incurable disease and death were something we did not understand at that time. I did not know what it meant. We just knew we had a serious heart disease which was incurable. 

My sister was more mature than I was, so she became depressed once she understood the illness. Her spirit collapsed and the health collapsed. The family was in heavy debt then and had no money for medical bills. When we were chatting, we talked about death. For me, death was no more than a scary word. I felt death was too far away to think about. I often told my sister, “if you were dead, I would die with you.” She always kept silent. Later on my sister told me “I will not die with you if you are dead.” I was shocked and sad. My sister said again, “if I die, you must live well, eat well, and look after things for me. You have to live for me. If you were dead, I would do the same.”

One month after the talk, my sister died due to heart failure. I finally understood what death is. My sister who lived side by side with me for 17 years left me forever.I lost her forever. I was destroyed by the loss of my sister. I kept thinking that I’d rather die quickly so that I could keep her company. My parents were very concerned about me, but helpless.

Then one day, I heard a colleague of my father say to him, “look at you, Lao Guo, your hair has become white. You lost a daughter and do not know how long another daughter can sustain. We are very sorry about that”. I noticed that my father’s hair was almost white. He seemed 10 years older. There were more wrinkles on my mother’s face. They were so sad and gaunt. Seeing this situation, I knew I could not give up. They had lost a daughter and they could not afford to lose another. After that day, I grew up. 

Iseek Cultural Center is a public welfare organization initiated by patients with PAH (pulmonary artery hypertension), which aims to provide support and service for people with invisible disabilities as PAH.

Recently we held a propaganda activity in our complex. Someone came up and asked our volunteers if their blue lip meant they were born in the 80s and 90s. She hypothesized that their lips were from a lack of exercise. She did not understand our activity! 

However, we kept on explaining relevant knowledge to passing people. People with PAH look normal in their appearance so sometimes people think they are just lazy. They do not know how the illness tortures the patient. It is great to don the blue lips and help people understand.  

The misunderstanding we encountered during the activity made us realized the importance of propaganda. If we do not tell people what PAH is- who will come and help us. We still have a long way to go and we have to work together.

Original article written by Zhe Fan, translated by Maggie Li, Edited by Yanyan Zhang

Iseek Cultural Center is a public welfare organization initiated by patients with PAH (pulmonary artery hypertension), which aims to provide support and service for people with invisible disabilities as PAH.

People with PAH are truly angels without wings. They have to suffer through many difficulties, such as chest distress, difficulty breathing and anoxia. PAH is difficult to diagnose, expensive and has no cure. Marriage, children and work are often unsustainable to PAH sufferers.  

During the national day holiday, we hosted an activity wherein we painted people's lips blue and took their picture in front of a symbolic building in Guangzhou. The purpose of the activity was to bring more attention to this rare, hidden and deadly disease. 

On the morning of the 5th, local volunteers with blue lips came to the Zhuhai Plaza subway entrance.They held the Iseek banner as they walked along the road. They attracted a lot of attention from people and they told everyone all about PAH.

Jiji, a member of Iseek and a PHT patient, helped to paint the lips of many children. We chose the blue color because PAH patients often have blue lips from a lack of oxygen. We hope this activity will help people to understand the disease.

Chen, a doctor at the Guangzhou Institute of Respiratory Disease, joined the group of volunteers. In the picture below he is explaining PAH to American tourists.

Original article written by Fan Zhe, translated by Maggie Li, edited by Yanyan Zhang

Iseek Cultural Center is a public welfare organization initiated by patients with PAH (pulmonary artery hypertension), which aims to provide support and service for people with invisible disabilities as PAH.

People who see Zhang Xiaohua’s photo can not help but say, “Why are her lips and fingers so purple”?

Zhang Xiaohua is a PAH patient. She had not received any standard treatment, because her family is poor and she has a father who is sick in bed. At the end of 2012, her condition became worse. She had serious shortness of breath and often fainted, both signs of heart failure.

Fortunately, starting in February Zhang Xiaohua began to accept targeted treatment, taking 6534 RMB of medicine every month with the help of loving people. Part of her medicine was donated by Iseek.

On May 5th, Zhang Xiaohua participated in World PAH Day activities and she met the delegation of donors who had donated 40,000 RMB for her.

An oxygen generator supplier provided an oxygen generator for us at the meeting. The supplier also decided to donate an oxygen generator and a pulse oximeter to Zhang Xiaohua.

Iseek Cultural Center is a public welfare organization initiated by patients with PAH (pulmonary artery hypertension), which aims to provide support and service for people with invisible disabilities as PAH.

About 80 patients and their family members from all over the country participated in World Day of Pulmonary Hypertension activities. We provided a small subsidy for travel and free accommodation for some of the patients. 

Two of the patients had especially unusual circumstances. One was an 82-year-old man and another was a baby under one year of age. Their stories show that PAH can hit people at every age.  

Many factors can cause pulmonary hypertension. We invited doctors from many disciplines and from over 10 hospitals, who gave free consultations to the patients. During the meeting, many patients were able to make a reservation directly or were hospitalized via the green channel. 

The doctors were also hired as profession advisers for Lseek and will provide long-term consultation for the patients. 

Iseek Cultural Center is a public welfare organization initiated by patients with PAH (pulmonary artery hypertension), which aims to provide support and service for people with invisible disabilities as PAH.

Yesterday, it became warm in Beijing. We joined a charity sale at the campus, for it is graduate season and many people take out their belongings and sale at low prices. 

Some clubs raise money for Ya’an earthquake, but we raise money for World PAH (pulmonary arterial hypertension) Day. It is also kind of campus activity. 

I have been in Foreign Trade University for the activity twice. We have participated in “blue lips” activity last year, so we are familiar to the people here. Someone bought a T-shirt with 60 yuan which was sold 55 yuan. The buyer offered 5 yuan more for the donation. 

There are many international students in the university, but they are still curious about the English words “Get Breathless For Pulmonary Hypertension” on the T-shirt. 

Lack of public attention for PAH is the situation in the world. World PAH Day let us to work together for 25 million PAH patients. 

Original article written by Huan Huang, translated by Maggie Li, edited by Yanyan Zhang