Mum-of-three with rare Alagille Syndrome turns to NuroKor technology to reduce use of strong painkillers
"It was just a constant cycle consumed with pain and drowsiness. "
-Clare Smith, 33, from Cardiff
Clare lives in Cardiff with her husband and three children. She was born with a rare genetic disorder called Alagille Syndrome that has also affected her younger sister, Lucy (30) and three-year-old daughter, Chloe. Since her diagnosis, Clare has had to undergo multiple open-heart surgeries and for 12 years relied on a daily dose of heavy-duty painkillers to manage her disorder, until discovering NuroKor technology. She has also had spinal surgery to correct four prolapsed discs - a rare intervention, not commonly associated with Alagille. Clare shares her story with NuroKor HQ.
“People immediately think I’ve been in an accident, when they hear about the level of surgery I’ve had for my back. I’ve spoken to multiple doctors and others in the Alagille community and not one other person has shared the same symptoms. It’s just me."
Alagille is a degenerative condition, so I was realistic that the back surgery wouldn’t ‘fix’ everything. I was fortunate that it did reduce some of my symptoms, but as far as managing the pain goes - it didn’t change a thing. I had to resume taking high doses of painkillers just to get by, something I’d been doing daily for almost twelve years.
I was taking a lot of medication each day - including morphine, oramorph, pregabalin and gabapentin.
I’ve noticed my GPs are more hesitant to write prescriptions for me nowadays. The drowsiness and other side effects of these painkillers takes its toll, especially when you are on them long-term. I couldn't get down on the floor to play with my three young girls. Prescriptions, such as a recent one, diazepam, just redirect the pain - leaving me immobile with a migraine-type headache. It was just a constant cycle of pain and drowsiness.
When my family friend, Mark Hopkins, mentioned a bioelectric device his pharmacy patients had success with - I was sceptical but willing to give it a go. When I first tried the device, I was instantly walking straighter and in a more relaxed way. After more consistent use, I was able to reduce my pain levels by 70%. My overall stiffness has dissipated and it has allowed me to keep moving and stay active for my kids.
"I've now managed to gradually reduce and recently stop taking codeine, which is a massive win for me, considering the major painkillers I've been ‘chained’ to in the past. It's nice to have an alternative option, rather than relying on the drugs and I’ve got so much more energy since I stopped taking them."
Clare recently returned back to work from maternity leave. She works on a mental health ward, where she helps elderly patients to manage their Dementia, Schizophrenia and Alzheimer’s disease.
“My work is quite physically demanding and returning to this environment has contributed to the onset of a few flare ups. After taking blood tests, doctors have confirmed that I have either got rheumatoid arthritis or possibly lupus. However, because of COVID, I can’t see anyone to confirm this diagnosis.
This news has contributed to a rise in my pain levels again, but fortunately my pain is now much more manageable by using the mitouch device morning and night.
I am fortunate that both my daughter and my own Alagille is manageable, sadly many are not as fortunate. My sister is only with us today, because she was lucky to have a liver transplant when she was born. Sadly, there are so many children on the waiting list, and not all are able to find a liver donor in time. Donating organs can be the life-changing difference for another family like mine.”
For more information about Alagille Syndrome go to https://alagille.org/ and for details on NuroKor technology go to www.nurokor.co.uk
Founded in 2018, NuroKor is a company committed to the development of bioelectronic technologies. NuroKor develops and formulates programmable bioelectronic software for clinical and therapeutic applications, in a range of easy to use, wearable devices. It provides the highest-quality products, delivering personalised pain relief and recovery support and rehabilitation to patients.