"The research fellowship allowed me to have amazing conversations with patients.”

Adine Adonis, Clinical Specialist Physiotherapist

Many patients affected by spinal cord inflammation are left unable to walk, with bladder, bowel and erectile dysfunction severely affecting their quality of life.

The progressive condition known as HTLV-1 Associated Myelopathy (HAM) - kills off spinal cord nerves, including those that supply the leg muscles. 

In 2016/17, Adine Adonis completed a research fellowship with us, investigating the use of a hand-held dynamometer to measure muscle strength in patients affected by the condition.

Her study, involving around 30 patients, tested whether the device could be used in a clinical setting to identify muscle weakness sooner and provide treatment options to prevent further muscle and functional deterioration.

Adine said: “The research fellowship allowed me to have amazing conversations with patients.”

“We talked about life, race, what it’s like living with HTLV-1, and why they decided to join the research.

“They felt someone saw value in hearing about their experience, and how they managed things.”

These conversations inspired her to pursue a pre-doctoral fellowship in 2021, where she interviewed HTLV-1 patients to understand how health professionals could better support them and improve their quality of life.

She said: “The transcripts from the pre-doctoral fellowship show that the patients wanted the world and researchers to know what they were going through, and what areas they thought should be targeted.

“It threw up a lot of questions about the way we run our consultations, and it highlighted that patient’s voices need to come through more strongly when it comes to managing their condition.

“You can see how and why things fall apart, and a lot of the time it’s because people don’t feel seen or heard."

Adine’s findings led to a PhD proposal looking at which outcomes matter to people living with HTLV-1 and which tools best measure these.

She has been awarded a prestigious NIHR Doctoral Clinical Academic Fellowship to complete her PhD starting in December 2024 and will spend 20% of her time in a clinical setting, joining one HTLV-1 clinic a month in London, Manchester, Birmingham and York.

Adine hopes her research will influence how clinicians treat other rare diseases in the UK, encouraging a more collaborative approach with patients, using their goals and desired outcomes to guide treatment plans.  

Inspired by Adine's research story? Find out how you can apply for a fellowship to begin your research journey.