Maisetti, living with lymphoedema

«A simple mole transformed into a radical change in my life»

Anna Maisetti, founder of the Stile Compresso community

Sometimes, petty negligence can lead to a serious problem, and a single mole can devolve into a grievous disease. Skin is a delicate organ, especially during summer time and under the blazing sun: this is why it should be protected to avoid flakiness, sunburns and, in the most severe cases, cancer. Anna Maisetti, founder of the Stile Compresso (Compressed Style) community and author of the book “Lymphoedema after Cancer”, narrates her life and how it changed after discovering a skin cancer that eventually led her to developing lymphoedema.

A bolt out of the blue

«When I was 22 years old, today i’m 35, during a beautician session, she made me notice a bump, a little pink mole on my right gluteus» Maisetti recounts, who at the time worked in the modeling field. She then scheduled a medical check-up from a dermatologist because she wanted to have it removed for aesthetic purposes. «I used to extensively use tanning beds, and go under the sun with no protection whatsoever» she explains.

«However, that dermatologist did not realise the severity of the situation and did not pay attention to the characteristics of that mole» Maisetti continues. «He suggested removing it without haste, and I scheduled the operation with the NHS. 1 year later, when the time for surgery came, it was too late». During the surgery, doctors realised that the mole was a sign of skin cancer. Since it was late, surgeons had to remove inguinal lymph nodes because tumour cells reached the sentinel node.  

After the invasive surgery, that in the past was one of the only methods to contrast skin cancer, Maisetti developed lymphoedema, b chronic, debilitating disease that was not widely known yet and was, and still is, sometimes mistaken for lipoedema. The pathology presents severe symptoms that are hard to face on a daily basis. «A simple mole transformed into a radical change in my life».

The beginning of Stile Compresso

«Lymphoedema is a pathology that completely changes everything you know. My life changed both from a medical and personal point of view, because it requires constant check-ups and treatment» she says. Treatments go from physiotherapy to home care, that mainly consists in compression of body parts affected by lymphoedema. All of these treatments make a dent in a person’s self-image, preventing them from dressing or going to the beach or to a wedding normally. Furthermore the Italian NHS gives no support to people affected by the disease.

«The first times I looked up lymphoedema on the Internet, I could only find terrifying images with almost no useful information» she says, and this is the reason why 8 years later she opened a safe place for people with lymphoedema to discuss and find all the useful information they need. «I started this community that was soon found by all those people that suffer from lymphoedema but have never been able to find someone to speak with about their daily challenges».

This community also facilitated communication between patients and lymphoedema experts, and quickly became a place where people exchanged health and even style tips. Those who suffer from this disease have to change their lifestyle, but also their dress style. «For example, people with an asymmetrical body that have to use shoes of different sizes, or people who have to use compression garments to go to the beach, struggle with their self image» she continues. «Many who saw my photos finally found someone they could relate to». Raising awareness also helped stylists understand that people with lymphoedema are in need of inclusive fashion items that can help them express themselves.

Preventing cancer with protection

In order to fight cancer and avoid relapse, Maisetti started caring more for her skin, moles and scars by having regular check-ups. Furthermore she noticed the great advantages in using protective sunscreens to prevent the sun from damaging her skin. «When I found professionals who could advise me better, I noticed on my body the difference when immediately treating scars, using products that were made for protecting them, both from a medical and an aesthetic point of view».

«Almost every time I have a dermatological examination, there are some moles that have to be removed. My body has numerous scars because of this» she explains. «I try to apply the Revée Sun/Care protection which was formulated to protect scars. During summer and with the blazing sun, I apply it even twice a day, and the difference is noticeable» she concludes.

Maisetti’s story is useful to understand the importance of protecting the skin from the sun, especially when it is already weakened by diseases or scars. But even a “perfect” skin without apparent problems is subject to the damaging action of the sun, and sunscreen is pivotal in avoiding sunburns or even tumours. The main message, though, is that of camaraderie: whatever it may happen, people will always find a way to share their experiences and help others. Even after something incredibly tragic such as what happened to Anna Maisetti, who nonetheless found the strength to be a beacon for all people with lymphoedema.