The following was submitted by Anna Maisetti (@stile_compresso):
My name is Anna Maisetti.
What has your experience been with lymphedema?
I am 32 years old, and I am Italian. I have lymphedema in my right leg. I had skin cancer at 22 and secondary lymphedema is the consequence.
For eight years, I received incomplete and conflicting advice and treatment, but I never gave up.
Lymphedema can never be forgotten. I do everything I can to try not to get worse. I never neglect it, and I’m always looking for solutions and news.
My Instagram profile was my salvation. I decided to open it in the moment of maximum depression. I didn’t know anyone in my condition, and it embarrassed me to show my compressed leg. But I had to show my legs to give and receive motivation and mutual information.
My Instagram profile was my salvation… I had to show my legs to give and receive motivation and mutual information.– Anna Maisetti
How does lymphedema impact your everyday life?
I wear compression garments every day. I often sleep with bandages of various types (self bandaging taught by therapists). I need constant and specialized therapies that are difficult to access properly. I have a healthy diet, and I do specific sports.
Lymphedema is part of my life. I can never forget it.
Lymphedema is part of my life. I can never forget it.– Anna Maisetti
It conditions every situation. Now, I am used to living with these problems, but there are still so many moments of difficulty in which I cry and despair. But then, the community helps me to find energy.
On the Internet, I tell my daily life. Often, I tell of problems that those who do not live with lymphedema or lipedema do not even believe exist.
Even wearing fashionable clothes is difficult; wrong shoes and clothes could be dangerous.
On the web, I try to convey messages that are sometimes amusing and ironic, because the sick also need to smile. But every post has a great motivating meaning and the seriousness of the pathology is always evident.
Have you ever met anyone else with lymphedema?
I met so many people with lymphedema from all over the world, both virtually and in reality. Everyone has a different but special history. For me, listening to the stories of other patients is a great help and inspiration.
During my 8 years of complete solitude, I would have loved to meet someone who had already lived my difficult journey. For this reason, I have shown myself publicly.
What has your experience been with the health care system?
Every body is totally different, and patients need personalized care pathways. I asked for help in many hospitals before finding the right path for me.
My condition was often underestimated; some doctors saw me thin and with a leg without elephantiasis and this was good for them. They didn’t understand my suffering. They did not notice that I had the wrong compression garments and that chronic fibrosis was being created.
Some doctors said it was just an aesthetic problem, and unfortunately, some still say this. In Italy, there are specialized doctors, but it is not always possible to reach them.
Now in Italy, many costs are still fully borne by the patient, even though there is a national health system; this is unfair.
Now in Italy, many costs are still fully borne by the patient…– Anna Maisetti
Not all hospitals are prepared to treat patients adequately.
How does lymphedema affect your close friends/family members/relationships?
For many years, only my friends knew my problem. Now that I have exposed myself publicly, I try to explain to anyone what lymphedema is and what it entails.
Are you involved with the lymphedema community (in terms of fundraising, volunteering, attending events, etc.)?
I was invited to talk to the physiotherapists of the future at the university. I was invited to the health ministry in Rome to talk about my experience and the community during the world day of lymphedema in 2019.
I wrote a book that tells my story. The title is: LYMPHEDEMA AFTER CANCER: stile_compresso. It is now available in English and Italian only on AMAZON.
How do you feel about the lymphedema community? Are there any areas that need improvement?
I believe the only way to improve the situation is the collaboration between patients, doctors, companies and politics.
The message I try to convey is to always consult specialized doctors and not give up. Do not allow yourself to be defined by lymphedema. Do not hide. FLAUNT YOUR COMPRESSION.
FLAUNT YOUR COMPRESSION.– Anna Maisetti
What would you like to see for lymphedema within the next few years?
For the future I hope that researchers can find a definitive and accessible solution for all patients. In the meantime, I hope that lymphedema is diagnosed promptly and that there are more and more professional figures.
For the future I hope that researchers can find a… solution for all patients. In the meantime, I hope that lymphedema is diagnosed promptly…– Anna Maisetti