關於 epidermolysisbullosa ，我們在網路上蒐集到這些相關的討論、資訊與評價

"True strength is the ability to go through life each day accomplishing the impossible, doing what no one thought you could." This quote may sound very simple to most people. But to a child with #EB #Epidermolysisbullosa AKA Butterfly Child, going through each day is in fact trying to accomplish the impossible.
I never knew that this rare and painful condition existed until @olindacho invited me to a gig she did for #DEBRA last night. The videos and pictures of these children really broke my heart. I can't imagine a child that can't be hugged from birth and even blinking the eye causes pain.
This condition is so rare and unheard of, that even medisave doesn't cover it (at this point). Let's help to create more awareness so that people knows more about this condition.

Assalamualaikum to all aunties and uncles...My name is Cahaya Amanda, i am 40 days old..I have been diagnosed with Epidermolysis Bullosa (EB). Its a very rare genetic connective tissue disorder that affects 1 out of 20,000 birth. My skin is extremely fragile, the blisters come and go everyday and i have to suffer the pain. As what the doc told my mummy, there is no cure for EB... What mummy can do is to take care of me with lots of love by changing my plasters and bandage so that i wont get any infections.. Its not that all, i cant even put on clothes or diapers as it will only worsen my skin condition..Yes its very painful but whats more painful is to see my mother crying everyday while holding me.. I can hear clearly mummy prays and dua to Allah so that i can stay healthy n grow up like any other normal kids.. Pls pray for my fast recovery as well..

I am now being treated At HKL since my first day and the cost of medical supplies such as plasters, bandages and some meds not less than Rm2000 per month. That does not include my other needs..mummy and daddy couldn't afford that much.. They have to take care of my 3 big brothers as well...

Those who wish to donate, you can always bank in to my mummy :

Name : suziyana bt jamaludin
Maybank : 1642 2139 1991
Contact no. 012-6344829 (suzy)

Thank you and may Allah reward you for the good...

#prayforcahayaamanda #epidermolysisbullosa
#babyniece

** harap kita dpt tolong baby cahaya dengan ape cara sekali pun...moga tuhan sj dpt membalas nye..