Woman Suffering from ‘Bubble Skin’ Disease Disowned by Family, Fast Facts about Neurofibromatosis

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By Jenille Cristy Maido | March 7, 2014 5:11 PM EST

While some families support each other whenever there are difficult circumstances, Sarotin, 46, from Indonesia has been disowned by her family for having a rare skin condition, and was forced to beg. 

Neurofibromatosis or commonly known as "Bubble Skin" is a rare skin disorder that swamps a person's body with bubble-like lumps. Sarotin has been suffering the disease for three years now. Her body fully covered, and a huge lump is covering half of her face. 

A mother of four, she has reportedly been funded by the local government to remove 70.5kg of tumor from her back, but it never stopped the disease from returning. Sarotin's situation worsened as her familiar affairs became troublesome as well. 

Sarotin is a widow and cannot afford a treatment. After fleeing from her home in Bandung, West Java, Indonesia, she is now staying and begging on the streets to survive. Despite her condition, Sarotin continues to have hopes about the future. She said that she would like to be beautiful like other women. 

What is Neurofibromatosis?

Neurofibromatosis is a genetic disease of the nervous system. It primarily affects how the cells grow causing tumors to grow on the nerves. 

People who commune along persons with Neurofibromatosis do not have to worry that they will acquire the disease as well. It is non-contagious and non-cancerous despite its grave appearance. However, there are cases that it may develop into cancer. 

Since Neurofibromatosis is has something to do with the genes, if a parent has it, there is a 50% probability that children would develop the disease as well. It can affect both males and females, and has three types types according to the U.S National Library of Medicine.

Neurofibromatosis Type 1 (NF1) causes nerve tissues to grow into tumor and bone deformity. More likely the condition suffered by Sarotin. It usually starts during childhood and symptoms could be present at birth. Type 2 (NF2) on the other hand causes loss of hearing, ringing in the ears, and poor balance. Onset of the disease usually start in the teenage years. The third one is called, Schwannomatosis that brings extreme pain. It is the rarest type among Neurofibromatosis conditions.

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