Creating Change,
Together
Lipoedema is often unrecognised and
misdiagnosed, but it doesn’t have to be.
Want your voice to be heard?
Are you a Lipoedema patient or a healthcare professional? Click here to take part in a current online survey into Lipoedema.
Together we are
making a difference.
Welcome to Lipoedema UK, a charity founded in 2012 for patients and healthcare professionals.
We are dedicated to raising awareness of Lipoedema – a unique and distressing condition.
Our mission is to help patients obtain a diagnosis and increase research into the most effective treatments.
‘Lipoedema patients’ needs have been ignored for too long.’
Sharie Fetzer,
Chair
What is Lipoedema/Lipedema?
Lipoedema is a genetic condition that affects almost exclusively women. Some estimates believe it may affect up to 10% of the adult female population.
Symptoms usually begin around puberty or at other times of hormonal change, triggering the development of excess fat in the legs, buttocks and sometimes the arms.
The visible difference in the size and shape of parts of the body affected can be extremely distressing, and can affect mobility.
Lipoedema fat is different from normal excess weight (obesity), and it doesn’t respond to low-calorie diets or exercise regimes. Lipoedema fat can be painful or highly sensitive to touch.
Most doctors and healthcare professionals lack the knowledge and skills to recognise it. There are no specific diagnostic tests and it is often misdiagnosed as either obesity or lymphoedema.
How can Lipoedema UK help you?
Lipoedema UK raises awareness of this little-known genetically inherited condition, which affects millions of women worldwide. Even today, people with Lipoedema frequently do not receive the help and support they deserve, and the condition is often misdiagnosed or unrecognized.
We want to help enable better diagnosis and treatment, and to provide a community for everyone affected.
Lipoedema UK activities & events
LIPOEDEMA UK EVENTS
PAST webinars
Real life inspiration
A high percentage of people diagnosed with Lipoedema (sometimes spelt Lipodema) say that the condition has negatively affected their confidence.
We’re here to reassure you that there are positive stories, too!
ZOE’S STORY
‘I first noticed my legs were big as a teenager in school. Kids were cruel and I was called “thunder thighs”. Jeans didn’t fit and I couldn’t wear leggings like the other girls. I already felt “different”.’
PAI’S STORY
‘I want to raise more awareness of this debilitating disease that many GPs are not aware of and are misdiagnosing women as obese. I also want to raise money for research so that we can get the treatment we need to manage this life-long chronic condition.’
We welcome you!
We are committed to making life better for you, and to highlighting your condition for healthcare professionals.
Our membership provides you with expert information and resources to share with your GP.
You will also gain access to our online meetings, which focus on health and wellbeing with presentations from health experts. For many people, Lipoedema is accompanied by feelings of isolation – these seminars are a fantastic way to lighten the load by meeting other people who are similarly affected.
We also offer membership for healthcare professionals.
Who are we?
Lipoedema UK is a charity founded in 2012 by a group of individuals affected by Lipoedema and healthcare professionals from St George’s Hospital, London.
Our goal is to improve awareness, early diagnosis, treatments and research. We believe that nobody should suffer alone, or be unaware that they have Lipoedema, so we encourage a vibrant community of those living with the condition to come together for mutual support, and to raise the aspirations for best practice treatments and standards of care worldwide.
Together we will beat Lipoedema.
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