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Nada Ashraf from Egypt shares her story this Rare Disease Day

22-year-old Nada, whose life has been impacted by a rare disease that makes it difficult for her to move, read, and swallow, has got a reason to celebrate – today she is a proud graduate of Alexandria University in Egypt.

Despite continuous pain, caused by a rare genetic disease called epidermolysis bullosa, she found the strength to overcome the challenges of studying and make positive adjustments.

Nada’s condition, epidermolysis bullosa, affects one in 50,000 people in the world. It makes the skin extremely fragile and prone to blistering and sores. Even the slightest touch can cause damage to the skin’s surface, resulting in secondary illnesses that require treatment from a range of medical specialists. There is no cure for this condition, only pain management, caring for wounds, and bandaging them.

Epidermolysis Bullosa frequently affects one’s ability to move and their appearance, so avoiding social interactions can sometimes feel like an easier option, especially with people who shun you because of the way you look. However, not for Nada. Throughout her life, she has been determined to overcome the challenges of social integration, despite being bullied at school and, sometimes, unable to attend classes due to her condition. She always found a way to persevere and study even when the pain was coming through.

She is confident that the lack of understanding of Epidermolysis Bullosa (EB) needs to be rectified. “The government must raise awareness of the condition because there are people in society who refuse to deal with EB patients thinking they have a contagious disease,” she says. “We need to help them get a job and have the right to live their lives. I would like to get a job now I have graduated from university. And I would like to be treated like the rest of my colleagues and not be rejected because of my illness.”

Social discrimination is a daily reality for people living with a rare disease like epidermolysis bullosa. Often, they find themselves stigmatised, rejected, and excluded from the rest of society, making them feel like ‘second-class citizens’. For example, Nada is not allowed to drive because authorities think her scars make it difficult for her to bend her right fingers, even though for her there is no problem. But she is not a quitter; Nada continues to use her outstanding strength of character to achieve more and more in her life. She wants people to see her, not her disease. “It makes me happy when people treat me well, or when I can excel in my studies despite my illness,” she says.

Like many other people living with a rare disease, Nada’s family and local patient organisations help her achieve her goals and dreams and experience life to its fullest. “My family have always stood behind me and supported me, convincing me of my ability to overcome any difficulty,” says Nada. “They never made me feel different, and gave me confidence that I could face anything.” She has also been grateful to receive support from the Yasmin El-Samra Foundation that supports and helps children with epidermolysis bullosa in Egypt. The Foundation helps relieve their pain, educate their families, and provide medical supplies, which are not covered by health insurance. It also bears all the expenses of the operations and tests that EB patients need. “I’m really grateful to this foundation,” says Nada. “Not only has it provided free medical and psychological support, but also enabled me to realise the amount of awareness being raised, and treatment offered, to help people – without wanting anything in return. It made me realise this illness was not the end.”

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