Yinan’s Personal Story: “The reason why I started the care center is that my stepfather, who was an orthopedist, was diagnosed with HDLS/ALSP. He is one of the most socially responsible people that I know. He has also been teaching me to actively engage in giving back to society since young. After his diagnosis with HDLS, he told us to continue the fight and research regardless of his result with this disease. His spirit inspires me to do this hard work. Meanwhile, as I have met more and more HDLS patients and carriers who are emotionally helpless and economically challenged, I find it is necessary to help them gain more access to resources that could help them alleviate the hardship.”
The HDLS Care Center in China was founded by 4 core members, including one patient and three patients’ family members in 2018. “We started with 4 people and now we have grown into 106 people including doctors, patients and caregivers in our chat group.” The Care Center organizes an annual Doctor-Patient seminar where the doctors’ share the most updated research progress on HDLS/ALSP, and we are planning to host our first patient offline meeting during the summer of 2022!
Meanwhile, the Care Center has a social media account to post articles about the knowledge of the disease, our fighting stories and doctor’s contact information. We invite our doctor’s and their team to write popular science articles to educate the patients and caregivers in areas such as the mechanism of the disease, current treatment and how to help patients recover after HSCT (Bone Marrow Transplant). The Care Centers WeChat official account has 254 subscribers now. We are growing but there is still a long way to go.
“I want our patients to know that there are many people out there in the world who are experiencing the same pain and love ensemble.” Yinan
Yinan, Co-Founder, HDLS Care Center, China