Hannah Betts suffered from harlequin ichthyosis, an incurable genetic condition that causes skin to thicken over her entire body. Despite her hardship, she maintained a positive attitude about the rare condition since birth. She was described as “an inspiration” as she “never stopped smiling”. Sadly, she passed away at age 32 on May 18 after fighting cancer for a year.
Her sister, Lucy Betts, has the same condition. “I still don’t think I can believe she’s gone,” Lucy said. “Sometimes I want to see her so badly that I feel I can’t breathe. It’s a very big rollercoaster of emotions. It’s really hard.” 
“She will be so sadly missed by so many people”
Lucy and Hannah had to maintain a strict routine to protect their sensitive skin due to harlequin ichthyosis. This involved soaking in a daily morning bath then scraping off an excess layer of skin, and moisturizing throughout the day.
Lucy explained, “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. We were so lucky to have her in our lives. She made everything so much better, she made me laugh like no one else could. She loved everything pink and sparkly. I’ll always remember her smile. She was so loving – she loved with her whole being. She was so honest. If you wanted to know if your bum looked big in something we would ask Hannah. If we were out and someone made comments about us then Hannah would tell them in no uncertain terms to go away.”
Hannah had cerebral palsy in addition to harlequin ichthyosis. She lived in a bungalow at an accommodation facility. However, she was diagnosed with T-cell lymphoma in February 2021. As a result, she underwent chemotherapy and immunotherapy. But in February 2022, she contracted Covid-19 and went to James Paget Hospital in Great Yarmouth. Although she recovered from the virus, she died from cancer.
“She will be so sadly missed by so many people,” said her mother, Jan Betts. “She was such an inspiration to so many people, she never stopped smiling. Music was Hannah’s biggest passion. She loved singing and dancing.”
Her father, Clive, 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.”
What is Harlequin Ichthyosis?
Harlequin ichthyosis, also called Harlequin baby syndrome and congenital ichthyosis is a very rare skin condition. Newborns with this condition have thick skin plates that look like fish scales. The plates on the face can make breathing and eating difficult so these newborns are taken to immediate intensive care. While the condition is serious, there have been medical advancements to help the babies born with it. 
Symptoms of harlequin ichthyosis are worse in infants then vary with age. Babies are often born prematurely and will have thick scales on the body that easily crack open. This hardened skin can cause serious problems such as eyes not capable of closing, inside out eyelids, swollen hands and feet, limited mobility in the limbs, breathing issues, infections in the skin cracks, dehydration, and nursing difficulties.
Older children and adults likely live with red, scaly skin for the rest of their lives. They may have other symptoms like thin hair due to the scales on their head, unique facial features from stretched skin, frequent skin infections, hearing issues, problems with moving fingers with tight skin, and thick fingernails.
Harlequin ichthyosis is a genetic condition, and people can be carriers without actually having it. However, parents who are both carriers have a 25% chance their child will be born with the disease. Harlequin ichthyosis affects about 1 in every 500,000 people, according to the National Organization of Rare Disorders. There’s no cause or risk factor other than carrying the gene. There are tests to determine if you are a carrier for those concerned.
Since there is no cure, managing the condition is important for adults. This involves applying ointments and moisturizers to the skin, protecting it from sunburns, and avoiding extreme temperatures. Remember, skin protects the body from bacteria and viruses in addition to regulating fluid loss and body temperature, so management involves taking care of these needs a little more manually. 
Keep Reading: Rare disorder can turn fingers and toes white or blue when it’s cold