An Erdheim Chester Experience from a Chinese ECD Patient: 2012 to 2017

As written by Anzhen Qin, April 27, 2017

My First time hearing this rare disease’s name was December 2012 when I received a internal fixation surgery on my left arm. My doctor made a slip of my tissue from my left humerus bone. He told my family my bone seemed very crispy and was prone to bone fracture. After my first surgery, I only knew my disease was related to a cell histiocytosis disease, and the best result I heard was that it was a benign tumor that can be cured by itself. My second bone surgery started in May 2015. I felt uncomfortable in right femur after my climbing Taishan Mountain on May 2, 2014. And the feeling deteriorated with time going by. I finally had to sit on a wheel chair three months later. My doctor said there was lots of joint effusion around my right femur. I received an arthroscopic debridement operation to clean up the effusion in October, 2014. Because my right hip joint was badly inflamed, the effusion refilled itself two months later. My family and I went to Peking Union Medical College Hospital to search for effective treatment. Finally, we found Dr. Duan Minghui. He suggested injecting Interferon for at least three months. Then we returned to Xinxiang city. At last, my doctor in another hospital suggested replacing my hip joint because femoral head of the joint collapsed badly, and it could never be restored. In that period, I registered my name on the Erdheim Chester Global Alliance website after my searching for related information online. One day, a girl named Jin Xi sent me an E-mail asking for my treatment and experience on ECD. Then, I knew there was another person who also had the same disease in China. Jin told me she were trying to purchase Vemurafenib from an Indian pharmacy because of lower prices than Europe. I recovered quickly after the second surgery, and were able to walk and returned to my work place. Jin lived in Wuhan city, central China. She had lung infection and coughed continuously. I visited her in the National Day Holiday, October, 2015. Her parents bought Vemurafenib from a Hong Kong pharmacy. At the same time, she also received regular Interferon injection. When I told the treatment to Dr. Diamond, he replied seriously to me and suggested immediately stopping Interferon injection because it can suppress immune system, which could probably accelerate lung infection. At the eve of 2016 Spring Festival, Jin’s mother told me Jin’s situation went worse and her doctor gave up Jin’s treatment. Jin’s mother tried her best to apply accommodation from Memorial Sloan Kettering Cancer Center. But ECD finally deprived of her life in March, 2016. In December, 2015, I created a WeChat group in the name of Erdheim Chest. In the mean time, I applied a WeChat public platform for propagate ECD related information. At first, the group contained me, Zhou, Fan, Jin, Ou. Most of the earliest members found each other mainly through the ECDGA website. Now, there are more than 30 members in the group, including two doctors from Peking Union Medical College Hospital, and several ECD family members. I learned English hard in my studying for a PhD degree. But I never knew this habit and my disease connected together helping me become a volunteer for ECDGA to translate English materials for Chinese patients. Now, on the ECDGA website, it has already had Chinese version for Chinese readers. Furthermore, under the help of the WeChat Group, Chinese ECD patients are easily to find the same patients, and will not feel lonely anymore, and was accessible to Beijing doctors for checking-up and treatment prescription.