Psychological needs of people with Lipalgia Syndrome (Lipoedema) v1.0
Research type
Research Study
Full title
What are the psychological needs of people with Lipalgia Syndrome (Lipoedema) and the clinical implications arising from this?
IRAS ID
352608
Contact name
Louise Waddington
Contact email
Sponsor organisation
Cardiff University
Duration of Study in the UK
1 years, 3 months, 28 days
Research summary
Lipalgia Syndrome (Lipoedema) is a chronic condition marked by disproportionate adipose tissue accumulation, primarily affecting the lower limbs and predominantly women. Patients often report being dismissed by healthcare providers, as Lipalgia Syndrome is frequently misdiagnosed as obesity or lymphoedema (Dudek, Bialaszek, & Gabriel, 2021). In the UK, effective treatment faces challenges like limited professional awareness, insufficient diagnostic tools, and restricted access to specialised services (Dudek, Bialaszek, & Gabriel, 2021). These obstacles can exacerbate mental health issues which complicate condition management (British Lymphology Society, 2021).
Patient awareness has grown through social media and support groups, with global conferences fostering community knowledge (Lipedema Foundation, 2023). While clinician awareness is improving, it significantly trails behind patient understanding. Many individuals self-diagnose after recognising their symptoms in shared stories, but scepticism from healthcare providers remains prevalent due to the lack of confirmatory diagnostic tests, leaving patients feeling neglected (Lipedema Foundation, 2023).
Lipalgia Syndrome affects 5–12% of women and some adolescent girls, highlighting the inadequacy of medical responses (British Lymphology Society, 2021). Patients often face repeated dismissal and disbelief, resulting in traumatic diagnostic journeys. Many suffer from body shame, pain, reduced quality of life, disrupted social interactions, and mobility challenges, leading to significant psychological distress. Instances of helplessness and suicide have also been reported (Lipedema Foundation, 2023).
Currently, individuals with Lipalgia in Wales are treated through the Lymphoedema Wales Clinical Network Service as no dedicated service exists for Lipalgia patients in Wales.
In response, Lymphoedema Wales Clinical Network Service has begun collecting data on patients presenting with Lipalgia in an effort to better understand the condition and develop diagnostic criteria. Initial findings indicate that those with Lipalgia experience significant emotional and psychological distress. Therefore, this research aims to investigate the psychological experience of individuals with Lipalgia syndrome. This will provide a valuable basis for considering clinical implications and informing clinical practice.REC name
Wales REC 7
REC reference
25/WA/0198
Date of REC Opinion
28 Jul 2025
REC opinion
Favourable Opinion