Fatigue and blurred vision were the first signs for Chloe Baker that something wasn’t right. The 31-year-old moved home from New Zealand to be with her family and focus on her health. An eye test led to an MRI, and then a diagnosis of multiple sclerosis.
“The biggest shock was seeing the lesions on my brain and spine, I wasn’t prepared for that, it was the one time I cried,” said Chloe.
“Telling my family was one of the hardest things I’ve had to do, you have to be strong and calm when telling your family, but on the inside, you’re still processing what it means for you. My sister and I are very close and naturally she had a lot of questions, some of which I couldn’t answer.”
Chloe’s mum reached out to MSWA on her behalf and she now enjoys the support and services she needs to help with her MS journey. She says her monthly infusions can be exhausting but her body is responding positively. Heat intolerance, double vision, fatigue and anxiety are her daily battles but living a healthy lifestyle is something she now takes seriously, including no alcohol and being in bed before 9 o’clock.
“If I don’t get a good night sleep, the next day can be a struggle. If my body gets hot, it’s ten times worse and I need to close one eye to see where I’m going,” said Chloe.
Embracing the everyday challenges, Chloe has started her own ‘My MS blog’ to help others living with MS to tackle the condition with a positive attitude.
“I’m really passionate about promoting my journey with MS in a relatable way. I hope my story can create awareness and encourage people to donate towards funding research,” added Chloe.
For Chloe and many others with MS in Perth and around the world the research by Professor Prue Hart is giving them hope. In a world-first, the Perth-based researcher has delayed the development of MS in high-risk individuals using narrowband UVB treatment, something used to treat the skin condition psoriasis. Trials conducted by Professor Hart found that in 3 out of 10 people, with a single episode of MS who were treated with UVB, the progression of their MS was halted.
“We’re just blown away, we’re very pleased with the results. We had two groups of 10 people, of the 10 who were given the UVB treatment we’ve delayed the development of multiple sclerosis in 30% of them. Whereas those who didn’t get the phototherapy, unfortunately all of them have progressed from a very early form of the condition to what is classified as MS,” said Professor Hart.
“This is clinically significant and an example of where UV is not all bad. The intervention is very similar to that given to patients with psoriasis, where narrowband UVB phototherapy has proven safe and effective, with very minimal adverse side effects. There’s a group in the US keen to replicate our trial, we’ve got competitors, but no-one has done what we’ve done, we’re the first in the world,” said Professor Hart.
“UV phototherapy might help people with Type 1 diabetes or who’ve had a stroke. We’ve been too strict with the messaging around exposure to the sun. We’re not getting enough UV exposure because of a fear of skin cancer, kids are being wrapped in cotton wool.”
The 20 people chosen for the UVB trial had been diagnosed with clinically isolated syndrome, the first presentation of a disease that shows characteristics of inflammatory demyelination that could be MS but has yet to progress.
All the group had sufficient levels of vitamin D. Half of them received the standard UVB phototherapy, three times a week for eight weeks.
“It’s well known that the incidence of MS increases the further you are away from the Equator. Levels of vitamin D are a biomarker of being in the sun but also a number of other molecules are created, some are known, some are unknown. That gave us a clue that UV could be regulating the disease.” added Professor Hart.
“We’re also taking blood samples from the group to find markers in the blood to understand why some people get MS and why others stay in the pre-form or early form of MS. We’re interrogating what molecules are in the blood, can they give us clues as to why this disease is progressing from an early form to actual MS.”
Funding for the UV research is partly provided by MSWA and forms part of the record $2.6 million invested into finding the cause, cure and treatment for MS and other neurological conditions. For a third year in a row, MSWA has set aside substantial amounts of money for local research.
“Professor Hart’s trial and the results are very exciting and it’s fantastic that this is happening in Perth. It could be a vital breakthrough or at least be another piece in the jigsaw puzzle for people all around the world being able to better manage or control their MS,” said MSWA CEO, Marcus Stafford AM.
“MSWA’s funding of this research is part of our broader remit of now offering specialist support and services for people with other neurological conditions, including stroke, Parkinson’s disease, Huntington’s disease, motor neurone disease and acquired brain injuries.