What is known?
Lipoedema is almost certainly a genetic inherited condition because there is often more than one family member affected. It is thought to only affect women but there are very rare reports of men with similar signs and symptoms
Lipoedema can skip a generation, so a grandmother and granddaughter may be affected but not the mother. It is not clear why it is passed on to some female family members and not others. It can also be passed down through the male line.
No gene testing is currently available, but St Georges Hospital, Lymphoedema Dept, London are researching into lipoedema and associated genetics. Some estimates suggests that up to 11% of the female population may be affected.
The symptoms most often develop at puberty although Lipoedema has been known to appear during and after pregnancy or at the menopause.
Although Lipoedema was first recognised in the 1940s, very little research has been done into the disease. It is in very few medical text books and rarely taught in medical schools and so few health professionals even know it exists. As a result, Lipoedema is frequently misdiagnosed as obesity or lymphoedema;
Lack of diagnosis means that sufferers don’t get appropriate treatment or advice in order to prevent secondary health problems such as osteoarthritis, varicose veins, lymphoedema, and eating disorders developing.
Lipoedema UK is raising awareness of Lipoedema in the UK and currently working with the Royal College of General Practitioners to train Dr’s, nurses and all health care professionals to recognise and diagnose the condition.
Lipoedema UK also work closely with other international groups who are working to change the situation in their countries as ignorance of the condition is a world-wide problem.
Outside the UK, the spelling of Lipoedema can change to either Lipodema or Lipedema.