OmanPride: TedxMuscat speaker raises awareness on rare skin disorder
November 5, 2017 | 7:34 PM
by Shruthi Nair
Samiha Al Shibani has learnt to adapt to the disease and is trying hard to raise awareness about it. - Photos by Yousif Al Ghammari

Samiha Al Shibani, one of the inspiring speakers at TedxMuscat Women, is a 25-year-old graphic designer and entrepreneur who has made her rare skin condition a strength. “I think this has made me a special icon compared with other girls,” she said. Samiha is part of a WhatsApp group for people who suffer from Ichthyosis, a genetic skin disorder characterised by dry and scaling skin. Through the group they try to help each other out and spread awareness about the disease. “There is a WhatsApp Ichthyosis group. The members are from all around the world who have the same disease. So we talk to each other and discuss there.”

“The group has also had a strong impact on all of its members. Not all of them like to see the positive side. Some of them were too negative when they joined the group, but now they’re perfect. They’re leading other people with other diseases to be satisfied with themselves,” she added.

Although rare, there are a few people in Oman too who suffer from this disease. “Every day, we discover there is one more person in Oman with the disease. There are a lot of Omanis in the group. The mothers of the children suffering from the disease are in the group,” Samiha said.

Her wit and positivity has made her an extremely approachable role model for many young women in Oman, who aren’t confident about themselves or aren’t comfortable in their own skin.

“People around you bring you strength and you can take strength from them. Even if they say something negative, if you want to take the positive you can take it from him. Different things inspire you in different ways,” she said.

She has learnt to adapt to the disease and is trying hard to raise awareness about it. “I created a video explaining my disease and how it is something positive,” Samiha said, explaining how although initially she took some time to adjust to it, in her teenage years she slowly started realising it is just a part of life.

Samiha said it isn’t difficult to live with this skin condition. “It’s not as hard as people think. Our bodies don’t sweat, we sleep with open eyes. It’s not that hard. Some things are a little hard but I’ve already adapted to it,” she said with a confident smile.

She aims to go onward and upward without letting anything or anyone stop her from achieving her goals. “I want to focus on my business and take care of my health. I need to do several businesses. I’ve already started my next business,” Samiha said, inspiring, yet again, the scores of women who had gathered to watch her speak.

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