The Challenge
Since birth, Nur Izzudin, now 9 years old, has been struggling with an extremely rare skin disease called Bullous Congenital Ichthyosiform Erythroderma (BCIE), with only less than 10 recorded cases in the national records. It is characterized by scaly skin from birth and, thickening and hardening skin which develops as the patient grows older. When he was born, Madam Siti, Izzudin’s mother and primary caretaker, struggled to take care of Izzudin, where even the simplest of tasks could end up hurting the then fragile baby.
When asked if taking care of Izzudin is difficult, she replied:
“Yes, initially, he is so fragile, he is so small, even if I want to carry him, I am afraid that I will injure him unintentionally… but we keep learning about him, how to take better care of him“.
Solving the Puzzle
Due to the nature of the skin disease, any form of friction on Izzudin’s skin would leave an abrasion on him, this means that even putting a shirt on him normally would hurt him. His grandmother then sourced shirts that have zips around the shoulder to facilitate the wearing of the shirt, subsequently, they realized that button-up shirts were easier and better, but they had to find button-up shirts that had soft collars so that it does not cause abrasion on his neck.
A hot day causes his whole body to flare up in patches, causing him great discomfort, conversely, if the weather is too cold, his skin will be too dry and end up cracking. They realized through trial and error that air-conditioning to cool him down is not ideal as it dries his skin, hence, they place fans all around the house.
In facing these challenges, Madam Siti and her family treats taking care of Izzudin as a learning process. They treat it as a cipher they have to decrypt, a code to break and every day, they learn something new that will help them break the code, that will help them take better care of Izzudin, to alleviate his condition.
Clearing Misconceptions & Creating Awareness
Growing up, Izzudin was not cooped up at home to protect him from the external atmosphere, but he was brought out often to allow him to pick up social skills. One of the common misconceptions that the general public has about his condition is that it is contagious and sometimes, members of the public go up to Madam Siti and inquire about it. Madam Siti told us that clearing these misconceptions lends a voice to patients with the disease and empowers them to be more confident in facing the public.
Encouragement for Caretakers
Madam Siti leaves these words of encouragement to caretakers who are facing similar challenges:
“Your child may be a blessing to you instead of a challenge, they are more sensitive and less self-centred than others. Treat your child like how you want others to treat him, don’t coop them up at home, don’t alienate them from society, help to spread awareness of their condition to empower them.”