Profiles

Anna Maisetti

Anna Maisetti is a secondary lymphie from Italy. She had skin cancer at 22 years old, resulting in secondary lymphedema in her right leg.
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
Instagram: @stile_compresso

Kristin G.

Kristin G. is a primary lymphie living in Austin, Texas. She was born with lymphedema in her lower legs.
Kristin has a family full of lymphies but often feels underrepresented as a “primary” in the “secondary”-dominated community.
The following was submitted by Kristin G.:
What has your experience been with lymphedema?

I was born with lymphedema in both of my feet.

How does lymphedema impact your everyday life?

Some days I don’t think about it and I feel like life is just normal, but other days I realize that it has affected my every day life and routine. I wear OTC compression garments every day which can get hot, especially as I reach middle age hormones and hot flashes! I wear pants/jeans every day, even in the hot Austin summer. I don’t feel like I get enough support if I’m wearing shorts or a skirt. This limits things I can do outside especially in the summer because it is simply too hot.

Some days I don’t think about it… but other days I realize that it has affected my every day life and routine.

– Kristin G.
How do you feel you fit in with the lymphedema community?

I did not realize there was a community until I saw Cam Ayala on the Bachelorette. I feel a little outside of the community as very few seem to have primary lymphedema.

Have you ever met anyone else with lymphedema?

Yes! Lots – they’re all in my immediate family!

How does lymphedema affect your close friends/family members/relationships?

As a kid, I was very guarded about it. I don’t think my parents knew how to help me cope with being “different” and so I was left on my own. I think this made it a bigger problem than it would have been had it been out of the closet, so to speak. I think this made me not want to tell my friends, which made me not as close to them as I would have been.

What kind of treatment do you undergo for your condition?

I use over the counter compression garments from Walmart. I plan on seeing a therapist for therapy, medical grade garment fitting and a pump as soon as things can go through my insurance.

What do you wish others knew about your condition?

I wish others knew how much “tired feet” can affect your stamina. At the end of the day, if my feet are sore or my legs are swollen, I am exhausted. I really think I am a morning person because that’s when my feet feel the best.

How often do you discuss your condition with those outside of the lymphedema community?

Never.

What has your experience been with the health care system?

I am the patient doctors are excited to see because they learned about lymphedema in school but have never seen a live case. This is annoying because they never have solutions, only curiousity.

I am the patient doctors are excited to see… they never have solutions, only curiosity.

– Kristin G.
What would you like to see for lymphedema within the next few years?

Media coverage only because that is what seems to drive money invested in finding a cure, which is the ultimate goal.

Are you involved with the lymphedema community (in terms of fundraising, volunteering, attending events, etc.)?

I am just beginning to get involved.

How do you feel about the lymphedema community? Are there any areas that need improvement?

It seems geared toward secondary lymphedema. For me, I need experts on primary.

What kind of people do you feel are underrepresented in the lymphedema community? Have you personally ever felt misunderstood or isolated within the community?

Again, primary lymphedema is its own “brand” of lymphedema and although people with it are fewer in numbers, our needs are just as important. I do not feel isolated, but I still feel a bit apart.

… although people with [primary lymphedema] are fewer in numbers, our needs are just as important.

– Kristin G.

Lymphedema is not something to hide.

These are the faces behind the lymph.

Hear from those who have directly experienced the impact of lymphedema/other lymphatic diseases and chosen to share their stories with the world unashamedly.

Click through the Project Lymph profiles:

Kristin G.
Kristin G.

Primary lymphie
Concentrated in lower legs

Anna Maisetti
Anna Maisetti

Secondary lymphie
Concentrated in right leg

Jessica Sousa
Jessica Sousa

Primary lymphie
Concentrated in both legs

Alex Gleditsch
Alex Gleditsch

Primary lymphie
Concentrated in lower legs

Monique Samuels
Monique Samuels

Primary lymphie
Concentrated in both legs

Berlange Presilus
Berlange Presilus

Secondary lymphie
Concentrated in lower leg

Joshua D. Morrow
Joshua D. Morrow

Primary lymphie
Concentrated in left leg

Heather Evans
Heather Evans

Lymphedema specialist and chiropractor

Mary Kastelberg
Mary Kastelberg

Primary lymphie
Concentrated in right leg

Alison Penuel-Mahoney
Alison Penuel-Mahoney

Primary lymphie
Concentrated in left leg

Cam Ayala
Cam Ayala

Primary lymphie
Concentrated in right leg

Amy Rivera
Amy Rivera

Primary lymphie
Concentrated in right leg

Each profile serves to highlight the unique experiences and struggles of individual lymphedema patients, which when put together, paint a representative picture of the diverse lymphedema community.

Through sharing even a wee piece of our journeys, we can inspire others struggling with lymphedema and other lymphatic diseases to share a piece of theirs.

This could be the first step in creating a long-lasting, ambitious network of people that together act as

a platform for those who feel voiceless, a community for those who feel isolated, and a movement for all.