The workshop brought researchers of disrupted adrenal function together with people who live with adrenal and pituitary conditions. It was led by Dr Eder Zavala, who uses mathematics to study the natural variation in cortisol levels that he calls ‘hormone dynamics’.
Lucy Beese was one of several ADSHG members who were invited to attend. Lucy, currently studying biology at university, was diagnosed with Addison’s four years ago while doing her GCSEs and has had insulin-dependent diabetes since the age of 2. Lucy said,
“The workshop gave information on the mathematics behind hormone control in the adrenal and pituitary glands, and its importance for improving future drug therapies.
“Some of the clinical applications that could be developed from this research were immensely exciting to me, such as wearable technology.
“With Fitbits and Apple watches becoming an everyday accessory, the idea of a wristband that could measure cortisol levels would make management of steroid dependant conditions far easier. I have Type 1 diabetes and already wear an insulin pump, so the development of algorithms that control a cortisol infusion pump fascinated me. Maybe someday there will even be a device that can control both insulin and cortisol infusion simultaneously.”
“The workshop also gave me a chance to talk to other people with steroid-dependent medical conditions and meet the clinicians and researchers interested in getting the best treatments for us.” Lucy said, “It was refreshing to see researchers so interested in tailoring their work towards the priorities of the person with the condition and not simply towards ‘a disease’. We were given the opportunity to talk about which aspects of our condition we thought required most attention, from diagnosis and our current treatment regime to side effects that we may experience. The day was a fascinating experience and I think it was really beneficial for everyone involved.”
Eder Zavala commented, “We wanted to hear directly from people living with endocrine conditions about the most pressing issues associated with their diagnosis, early and current drug therapy, any side effects, emergency care, and their perspective on priority areas to improve quality of life.
"Further studies will be needed to translate current knowledge into automated drug delivery systems. A network of patients, clinicians, and researchers will be critical to collect pilot data and develop a biomedical application.
“I’m grateful to Prof Stafford Lightman and Prof John Terry who supported the project from the beginning, as well as the Pituitary Foundation and Addison’s Disease Self-Help Group.”
For more information, see Dr Eder Zavala’s blog.
This article was first published in the December 2017 edition of the ADSHG newsletter.