A beautiful butterfly, Sayuri
An article by Tanvi Fadnis
Sayuri Ram, a 3-year-old little girl from Kolkata, India, is diagnosed and fighting against a rare genetic skin disease called Epidermolysis Bullosa (EB). EB is a skin disease that causes the skin to blister and peel. These blisters form at the slightest touch and may appear in response to minor injury, heat or friction from rubbing, scratching, or adhesive tape.
EB is caused due to lack of certain proteins which hold the different layers of skin together. Depending upon which type of protein is missing, there are various forms of EB. Its severity can range from mild to lethal. Because of the blisters, the skin tears off and wounds are more prone to infections.
There is currently no cure for this condition. Management involves wound care, pain control, controlling infections, nutritional support, and prevention and treatment of complications. Many researchers are working across the globe to try and find a cure for this extremely painful and life altering disorder.
Sayuri’s parents are her full-time care takers and they are currently using a special foam bandage which does not stick to the open wounds and is less painful while changing. It must be changed every day to avoid risk of getting infected. This takes them 2-3hours at times. Sayuri’s whole body needs to be wrapped in bandage as it also protects the parts of the skin which are not wounded. One sheet of this bandage is approximately $70 AUD. On an average she need 40-45 sheets of bandages per month.
Sayuri is currently enrolled in a clinical trial at St. George Hospital in Kogarah (Sydney, NSW) which is sponsored by an American company. It is an open label multi-centre extension study to evaluate a cream which is supposed to heal wounds faster and its safety in EB patients. The sponsor takes care of the doctor’s fee and consultation charges and also for the creams that are provided. For this trial they need to travel once every 3 months from India to Australia. This is not only causing Sayuri’s parents mental stress, but they are financially strained too.
They come from a low economic background and are trying their best to give Sayuri a better quality of life. As she requires so much attention and care, both parents cannot work and are dependent on support from extended family and friends.
We would appreciate any kind of support towards Sayuri’s medical aids (bandages and creams). If you need any more details or to help in your own way please email us at the following: South Sydney Indian Association: email@example.com