Lymphedema with Anna Maisetti
Anna Maisetti is from Northern Italy and shares her story of living with secondary lymphedema, a condition she developed following treatment for skin cancer 15 years ago. Your health journey started with a diagnosis of advanced skin cancer at the age of just 22.
What was the prognosis, and what treatment did you receive?
At 21, after noticing a spot on my skin during a waxing session, I was diagnosed with a rare skin cancer that had already spread to the lymph nodes. The treatment was surgical, involving the removal of over 30 lymph nodes from my right groin. After the surgery, the doctors informed me that I would likely develop lymphedema, a condition that, unfortunately, has no definitive cure.
Following the treatment, you now suffer from lymphedema. How does it affect you?
Lymphedema is a chronic, debilitating, and progressive condition that causes swelling due to a deficiency in the lymphatic system. In my case, lymphedema is secondary (but there is also a primary form) to the treatment of skin cancer. Every day, I have to wear compression stockings and multilayer bandages and undergo lymphatic drainage treatments. Managing this condition impacts every aspect of my daily life, from skincare to diet, movement, and rest.
What are some of the main difficulties you’ve faced living with lymphedema in terms of access and others’ perception?
The first few years were very difficult, partly because of the challenge of finding healthcare professionals knowledgeable about the condition and partly due to the constant financial investment required for treatment. I struggled to access stockings and devices in the right sizes, and the medical community around me didn’t always acknowledge the severity of the condition. Additionally, I felt ashamed of my compressed leg, feeling less feminine and embarrassed whenever someone noticed my condition. I hid and faced the illness alone.
The community you’ve created on Instagram is called @stile_compresso. What has been the response to it?
Creating the @stile_compresso Instagram profile was a turning point. Initially, I created it to find support and practical information, but in no time, I received incredible feedback from other people living with the same condition. Within a few days, I found about ten patients, and now the community has over 26,000 members, making it the largest and most active international group about lymphedema. The page has become a reference point, not just for patients, but also for doctors, professionals, and companies interested in this issue, inspiring many others—both patients and professionals—to share their stories and inform others about it.
You’re the first model in Italy with lymphedema to walk the runway. Tell us about the experience and why you think representation is important.
I’m incredibly proud to have revolutionized the concept of fashion for lymphedema. I’ve always loved fashion and thought my dream was over due to my condition. It all began when I participated with a close friend named Pernille in the Body Positive Catwalk in Milan. We represented and showcased lymphedema in its secondary and primary forms there, shedding light on this issue. Afterwards, I was chosen by agencies and brands that saw in me an authentic characteristic and strength that comes from a unique experience. Representation is crucial because everybody is valid and deserves to be celebrated. I hope my work inspires other women not to give up, no matter the imperfections. It was a personal redemption to go from being unable to tolerate the compression stocking to making it a style icon and a necessary second skin for health. I am a testimonial for brands that wanted to shoot with my swollen, compressed leg visible, and they didn’t feel pity for me; rather, they wanted me precisely for the energy that body diversity can transmit. Every time I see young women showing themselves with their compression stockings, telling their stories, or simply going out for a pizza and sending me a photo of their stockings or compression bracelets visible, I understand why I’m doing all this immense work. Inspiring others and finding strength in others is a powerful message.
What do you think of the Hidden Disabilities Sunflower for Hidden Disabilities, and what role does it play in society?
The Hidden Disabilities Sunflower is a truly important initiative. The Sunflower symbolizes hope and light and represents the strength we can find even in difficulties. It’s a symbol that encourages us not to hide our vulnerabilities but to embrace them with courage. In this way, the Sunflower helps raise awareness about invisible disabilities, allowing people to feel supported and understood. I’m very grateful to all the organizations and individuals working in the field of illnesses for their commitment to providing tangible help, always with particular attention to the emotions and feelings of patients, which are often overlooked. It’s essential to create an environment where people can feel assisted, respected, and valued.
What would you like to say to those going through a similar health journey and feeling alone?
To those going through a similar journey, I would like to say that you are not alone. I went through years of solitude, but I realised that sharing my story and experience has led to an incredible support network. Change is possible, and even when life feels impossible, we must continue to fight. Sharing our struggles and victories is key to finding strength in others and in ourselves. Be proud of who you are because every step you take is a step toward healing, not just physically but emotionally.
If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.
If you want to connect with Anna Maisetti visit Instagram @stile_compresso
The Hidden Disabilities Sunflower gives individuals a discreet, voluntary way to share that they have a non-visible disability, condition, or neurodivergence and may need extra assistance, understanding, time, or space. You can view the range and purchase the Sunflower product that suits your needs in the Shop in our website.
