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.

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.

In 2020, my daughter Rosie was diagnosed with general acquired lipodystrophy along with hepatitis (inflammation of her liver). We live in Cornwall.

When Rosie was referred to Derriford hospital in 2019 our paediatrician had never come across Lipodystrophy, however, she spent a lot of time researching to see what was going on with Rosie. 8 months of tests and photos were sent to Addenbrookes and then they called us to see them. We have been under Addenbrookes for around four years now. Recently she has spent a month in hospital, Derriford and Bristol and now diagnosed with vasculitis. My reason for becoming a trustee for Lipodystrophy? I’m passionate to make people aware of Lipodystrophy but also to learn more about it. It is so important for me to help people try to understand something that is rare so as Rosie and others like her grown up, society learn the facts best I can but also it’s ok to look and be different. If we were all the same life would be boring.

Catherine was diagnosed with Familial Partial Lipodystrophy in the early 2000s after years of being tested and re-tested for Cushing’s disease (five times!). In Catherine’s case, there is no known family history of Lipodystrophy because her mother was adopted, so there is no family history available from her maternal side.

Catherine was diagnosed with type 1 diabetes in 1994 and was put on insulin from day one. However, the insulin never worked. She was constantly advised to increase her insulin doses, but all that happened was that she gained more weight (and became more depressed) and was regularly shouted at by frustrated consultants who accused her of not taking her medication. She dreaded her diabetes appointments, especially when the tape measure was produced and she had to be weighed. Her blood sugars were always wildly out of control, and she was repeatedly lectured on the side effects of constantly high blood sugar levels. Unsurprisingly, Catherine has since been diagnosed with severe insulin resistance.

When Catherine attended her first Lipodystrophy event in Birmingham, she was truly astonished to meet people who looked like her, shared the same symptoms and issues, and understood the condition and supported one another. Since that first meeting, Catherine has attended other events run by Lipodystrophy UK and would like to support others living with the condition.

Catherine works as an Administration Manager for the NHS.

Kathryn was diagnosed with Partial Acquired Lipodystrophy in approximately 2017 after attending a routine appointment for another condition, where the consultant noticed her unusual body shape and referred her for further testing with the Addenbrooke’s team.

Kathryn is a registered nurse and currently works for a learning disability charity as a Governance Officer. She has a keen interest in promoting the work of Lipodystrophy UK and using the skills and knowledge she has gained in her current role to identify fundraising opportunities and raise awareness of the condition within her local area.