LIPODYSTROPHY UK - Key Persons
I have worked alongside, and more recently as part of, Lipodystrophy UK (LDUK) for several years. Between 2007-2020 I worked as a research nurse and specialist nurse supporting people living with lipodystrophy in the Severe Insulin Resistance Service; working alongside LDUK was an integral part of my role.
My role as trustee has enabled me to continue to utilise the experience I have, and to continue to work alongside those living with lipodystrophy. There is still much to be done in terms of raising awareness of lipodystrophy and improving access to care and support and I am keen to champion the voices of those living with and supporting people with lipodystrophy.
I have interests in research, patient engagement and education and hope to develop these areas within LDUK. I currently work as a Senior Lecturer in adult nursing at the University of Hertfordshire. Outside of work my twins, greyhound and chickens keep me busy and out of trouble!
Rachel is Rebecca's twin sister and also has the familial partial lipodystrophy, dunnigan variety. She received her diagnosis as a result of her sister's diagnosis. She has experience running her own business and so is well placed to manage the finances of the charity as its treasurer. Rachel is currently studying Neuro-linguistics at University and plans a career in research. She has been editor of the student newspaper and has been a subject representative for her year group. This can be applied to help the promotion of the charity and it's work.
Rebecca was diagnosed with familial partial lipodystrophy, dunnigan variety at age 17, in 2000. Initially, there was no support group available and so after getting in contact with other patients, she and Zoe Herrera set-up an informal support group for lipodystrophy patients in the UK in 2002. This group established it's first website c2003. Regular Patient Support Group meetings have been organised over the years in conjunction with the Severe Insulin Resistance (SIR) team at Addenbrooke's Hospital, Cambridge, and Rebecca also helped with the successful application for UK National Designation of Extreme insulin resistance and lipodystrophy service. Rebecca has been a research scientist in the field of molecular biology for over 14 years and so is well placed to understand the biological mechanisms of the condition as well as equipped to collaborate with medical and scientific experts. She is equally involved in various activities related to patient advocacy, education and awareness.
Becky was diagnosed with familial partial lipodystrophy in 2017, type 3, after an onset of health problems that eventually led her to be hospitalised. After doctor's investigated the causes of her health issues, she was eventually tested for Lipodystrophy and was the first person in her family to be tested. Becky is a web developer and runs her own blog which makes her experienced in various media outlets. She hopes to use this experience to help increase the presence of LDUK and the services they can offer patients.
Siobhan was diagnosed with familial partial lipodystrophy in 2017 as the result of another family member being diagnosed. Recently two out of her three children have been confirmed to also carry the gene. Siobhan is used to juggling family life, with running her own business, while fulfilling her role as the Chair of a school PTA. Meaning that she is organised and proactive, and experienced in fundraising and promotions. Siobhan is passionate about learning everything there is to know about lipodystrophy and raising the profile of LDUK for the benefit of current patients and future generations.