June 1, 2021
Live Life As It Is
Just like everyone else, people living with a rare disease have different attitudes towards life. Some of them are tough and strong, optimistic and accomplished; but some may feel hopeless and full of self-doubt at times. Those not living with a rare disease may have different perspectives about those who have been diagnosed, too.
They may respect and admire those with great accomplishments in the rare disease field; they may feel empathy for those who face significant challenges in their daily life. In the end, we advocate for a society that treats people with rare diseases equally, neither idolizing those who appear strong nor looking down on those experiencing pain and loss. We also want to encourage the rare disease community to live their life with a full heart, and to pursue their dreams just like everyone else.
On Rare Disease Day in 2021, we posted a video called “Live life as it is”. One of the people in the video has osteogenesis imperfecta (OI) and wants to become a painter; another has Emery-Dreifuss muscular dystrophy (EDMD) and loves adventurous sports such as diving and skydiving. They have been through tough experiences and heavy emotions like many rare disease patients, but they did not give up on their dreams. As time passed, they gradually learned to listen to their own hearts, and now live life at their own speed.
We hope everyone that has seen this video can realize that there is no difference between rare disease patients and people not living with a rare disease. While it might take more effort and perseverance for rare disease patients to realize their dreams, these dreams are possible with help and support. By sharing this video, we also want to reduce the feeling of despair rare disease patients may feel when facing their diagnosis and treatment – we want them to see a sunny and possible future.
Kevin Huang is the Founder and President of the Chinese Organization for Rare Disorders (CORD), which is a member of Rare Diseases International, in addition to being a rare disease patient himself. He is a member of the Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease.