A woman who suffered from an extremely rare skin disease, where her skin grew too fast for her body, has tragically died.
Hannah Betts, 32, died in hospital on May 18 surrounded by her family after a year long battle with cancer.
She has been praised as an “inspiration” after she refused to let her condition, called Harlequin Ichthyosis, define her life.
The disorder, which Hannah's sister Lucy also lives with, affects only one-in-300,000 babies.
Lucy, 35, said: "I still don't think I can believe she's gone. Sometimes I want to see her so badly that I feel I can't breathe.
“It’s a very big roller-coaster of emotions. It’s really hard.”
Harlequin ichthyosis is an incurable condition that results in thickened skin over the entire body. Around half of all babies affected died within their first few months, according to Daily Star.
Hannah had to carry out strict daily routines to stop her skin from cracking.
This included morning baths to soak in before rubbing off an excess layer of skin, as well as moisturising throughout the day.
Lucy said: “Having the same condition made our bond so strong. We went through a lot together that we couldn’t explain to anyone else.
“I knew exactly how she felt - she stayed with me for the last couple of years. My whole life revolved around her, and we were so lucky to have her in our lives.
“I’ll always remember her smile. She was so loving - she loved with her whole being.
“If you wanted to know if your bum looked big in something we would ask Hannah.”
Hannah, who also had cerebral palsy, lived in a bungalow at a supported accommodation facility, and she was diagnosed with T-cell lymphoma in February 2021. She underwent chemotherapy and immunotherapy to treat the cancer, but in February, she was admitted to James Paget Hospital in Great Yarmouth with covid.
Hannah’s parents Jan and Clive Betts paid tribute to their daughter as an “inspirational” woman.
Jan, 71, said: “She will be so sadly missed by so many people.
“She was such an inspiration to so many people. She never stopped smiling. Music was Hannah’s biggest passion. She loved singing and dancing.”
Clive, 66, added: “She was a very inspirational girl. She had the best smile ever. She fought bravely and unfortunately her little body just couldn’t take it anymore.
“As her father I’m so proud of her.”
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