A young mum from Cardiff says she’s optimistic about her family’s future after technology created by a UK startup enabled her to cut out addictive painkillers to cope with the debilitating effects of a rare genetic disorder.
Clare Smith, her sister Lucy Gardener and middle daughter, Chloe, all have Alagille Syndrome, which can affect the liver, heart, skeleton, eyes and kidneys and can be fatal.
Clare, 33, who has heart and spinal problems, said: “My condition means that I get stiff and hunched up and I am also in a lot of pain. I had been on strong, opiate painkillers for 12 years and I desperately wanted to stop taking them because they have nasty side effects and are so addictive.
“The NuroKor technology uses bioelectrical currents and has made a huge difference, enabling me to be more active as well as making it possible for me to gradually reduce my medication and then to stop it completely. I have a lot more energy now. Previously, the drugs made me so tired, which was difficult when I was on my feet working or looking after my three girls.”
NuroKor medical science director Dr Irem Tezer Ates said: “Clare was fortunately advised by a pharmacist to try an electrical stimulation device for pain and this enabled her to manage and control her individual pain treatment, with extremely positive results. It’s great when you hear about health professionals thinking “outside the box” to improve a patient’s quality of life and care – this has made a big impact on Clare’s daily life, both now and in the future.”
One of the biggest benefits for people using low dose, bioelectrical currents to manage problems caused by rare disorders such as Alagille Syndrome, in combination with possible rheumatological diseases, is the increased control it gives them over their pain relief and discomfort. The technology can also reduce dependency on potent painkillers – which can result in unpleasant side-effects – while also reducing inflammation and providing long-lasting results.
Clare’s three-year-old daughter, Chloe, has a hole in her heart and development delays. One of the characteristics of the disease is that symptoms can vary greatly, even among family members.
Clare said: “I wasn’t diagnosed until I was about three after my sister had a liver transplant due to Alagille. Doctors discovered I had heart and spine issues and I had several operations. We feel fortunate though, as many people die from Alagille if they can’t get a transplant or their heart condition is severe.
“We hope the awareness day will help people to push for the correct care and treatment. My sister was lucky but not all children with Alagille get the transplants that they need.”