I don’t need a diet, I need a cure.

by Erica Fiorini

People look at you in a weird way thinking probably “why she doesn’t go on a diet? Why  doesn’t she go to the gym?”… But they’re wrong.

Obesity and lipedema, or lipoedema, are often confused. Obesity is caused by overweight: excessive food energy intake and a lack of physical activity; however lipedema is unresponsive to weight loss through diet and sport. Very similar is another condition, called lymphedema, which, instead, is characterized by localized swelling caused by the dysfunction of the lymphatic system, and is a more common condition than lipedema.

I interviewed Luna, who just discovered to be affected by lipedema. She was 32 years old when everything started with pain in the legs. After some exams, the doctor diagnosed lipedema. Since “there is no concrete therapy there is not much that I can do. I just get sympathy from my friends and family”.

“Rare is an excuse to dismiss it.” – Tatjana

Lipedema is a rare disease characterized by bilateral enlargements of legs and ankles due to unusual accumulation of subcutaneous fat (see Figure). This condition is also associated with hematoma and pain and for this reason is also been called “painful fat syndrome.”

“Women are not aware of it. It is usually diagnosed as obesity.”,  Luna said. She is right.

This condition, is often characterized by family history and mostly women are affected: 11% of the post-pubertal female population, circa 17 million women in the US, and 370 million women worldwide. Cases of men lipedema are extremely rare; only: 7 known cases from literature.

Figure: The four stages of lipedema (image from lipedemaproject.org)

The doctor supported Luna by giving her some literature. However, information is limited because the origin of the disease is unknown. What is clear is the influence of hormones and the connection between estrogen and progesterone hormonal influence.

Lipedema has a propensity to be triggered and worsen during hormonal shifts (puberty, pregnancy, postpartum, and menopause). Increased levels of cortisol, which cause an inflammatory cascade, are also consequences to a very stressful situation (death in the family or divorce) which might initiate, thus, the onset of the disease. Lipedema is also misdiagnosed as a simple weight gain.

Also the few reported cases of male lipedema were characterized by hormonal shifts and in particular, by low testosterone level.

Lipedema can be very frustrating from a psychological point of view. People with this condition often undergo different problems ranging from lack of self-confidence to real depression and anxiety because of their appearance and lack of understanding of the disease.

Unfortunately there is not a definitive treatment for lipedema, but a number of existing therapies may be useful in managing symptoms: healthy diet, activity and compression therapy.

“I reduced drinking alcohol because that makes me eat much more and in uncontrollable matter” Luna said. Furthermore she wears compression stockings every day.

While surfing the internet looking for information about lipedema, I found Tatjana, who wrote a book about lipedema (Help Hope Healing). She also has a blog where four women with lipedema contribute to the blog describing this condition both from a personal and scientific perspective, also citing scientific literature.

About me – I’m from Italy and I moved to Zurich at the end of 2011 in order to do a PhD at the University of Zurich. I have been collaborating with CheckOrphan since November 2016.

If you would like to tell me your experience and help other people, please write me at rare.diseases@checkorphan.org.