My EB Has Taken My Hair But Not My Spirit | BORN DIFFERENT

34-YEAR-OLD Assya, from Birmingham, was born with a severe form of the ultra rare disease Epidermolysis Bullosa. Diagnosed with her condition at birth, Assya was only given 24 hours to live but has defied the odds and doesn't let the EB affect her positivity. Due to her condition, Assya lives with painful blisters all throughout her body, both externally and internally. She has to dress her blisters each morning, and on the worst days it can take up to seven hours to fully bandage herself. Though she experiences pain throughout her entire body, the worst-affected area is her head, where she's lost all of her hair. Assya told Truly: "I started losing my hair when I was about 11, 12, and then by the time I turned 16 I was completely bald - it was really hard." With over 15,000 TikTok followers, Assya now enjoys social media success. "On one of my videos I had over two million views - I was gobsmacked, it blew up within 24 hours," Assya continued. She now looks to keep posting on social media, hoping to inspire others to gain confidence whilst raising awareness for EB.
TikTok: https://www.tiktok.com/@ebqueeen
Instagram: https://www.instagram.com/assyaebqueeen/