Arthrogryposis Multiplex Congenita (AMC) is a condition that affects 1 in 3000 births world wide. To raise awareness of this condition, AMC Awareness Day is held around the world on 30th June. However, there is little awareness of AMC in Hong Kong. Kyra Wasan is on a mission to change this in Hong Kong and ultimately in Asia. We caught up with her recently to discuss AMC and AMC Awareness Day.
What does AMC stand for and what does it mean?
AMC stands for ‘Arthrogryposis Multiplex Congenita’, which is a term used to describe a baby born with joint contracture or multiple joints that are placed in one position and having limited flexibility to move. One of the main causes of arthrogryposis is fetal akinesia. When the baby is inside the womb, there is limited movement as compared to normally. During early pregnancy, the joints, muscles and tendons develop well by the help of the baby’s movements. If a baby has limitation in the movement inside the womb, these parts may not develop well, and extra tissue may form in the joints, making the joints to be stiff or to have difficulty in movements.
What’s your driving force towards organizing this event?
Although arthrogryposis is not a familiar term to most people, AMC occurs in 1 in 3,000 births and shows a wide spectrum of severity. Being so rare, it has been a tough journey for me as a child. I haven’t met anyone with the same condition to share about the experiences with regard to AMC in Hong Kong. There’s a huge support group for AMCers in many countries including the US, the U.K., Australia, Ireland and so on. However, there isn’t much in Asia. I hope to reach out to many families in Hong Kong and create a support group here as well.
How can we help and what should we know?
I believe that big things have small beginnings and it is this desire within that makes all the difference. You can be the change in the society with every small step you take. I would like to raise awareness of AMC with the support of people by spreading the word.
Is there a long term cure and can we work towards it together as a society in any way?
Unfortunately, there is no cure for AMC. However, there are some methods such as physiotherapy or operations to improve the range of motion and flexibility of the joint movements. I hope we can all work together and encourage more understanding of this rare condition. I also hope that Hong Kong can officially recognize June 30th as Arthrogryposis Awareness Day in the future.
Visit the AMC Awareness Day 2019 event listing for more information.