Raisa lives in Malaysia, is five years old, and has cardiac-valvular Ehlers-Danlos syndrome (cvEDS). Born at 31 weeks gestation and weighing just 1.07kg, Raisa spent five months in the NICU.
Raisa has congenital scoliosis and has been undergoing treatment with risser casts, a treatment for early-onset scoliosis in young children to achieve curve correction before bracing or to postpone initial surgical treatment until the child is older.
Raisa recently underwent treatment with her third cast. The doctor said we would wait until she reached 8 to 10 years old before deciding on surgery. The bolt is still too big for the spine. The doctor asked Raisa, “What do you want to be when you’re older?” She answered, “A superhero!”
You are a superhero, Raisa. Since the day you were born too early.
We were clueless when we first heard of Ehlers-Danlos syndrome (EDS), as cvEDS is one of the rare types of EDS.
I decided to Google for information and found The Ehlers-Danlos Society. They have been very responsive, although we are on the other side of the earth. With their helpline information on schools and EDS, I am able to highlight to my daughter Raisa’s teachers about her condition because, in Malaysia, it is truly rare. Almost all medical practitioners have never heard of it.
Our hope is that with increased awareness, we can ensure that individuals with EDS receive the proper medical attention and support they need. Empowering healthcare professionals to recognize the signs and symptoms of EDS leads to earlier interventions and improved patient outcomes. More research is needed to uncover the underlying causes of EDS, develop more effective diagnostic tools, and explore potential treatment options. By investing in EDS research, we can hope to improve the lives of individuals with EDS and potentially find ways to prevent or cure the condition.
