Profiles

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

Andrea Kolarikova
Andrea Kolarikova

Primary lymphie
Concentrated in both legs

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.

Andrea Kolarikova

Andrea Kolarikova lives with primary lymphedema in Slovakia.
The following was submitted by Andrea Kolarikova (@andrea.kolarik):
What has your experience been with lymphedema?

Until I was 18 (1992), I had no signs of lymphedema. I was an active sportswoman, I played top volleyball and in 1992 at the summer volleyball camp my right ankle started to swell. The coach and I attributed it to a bad rebound during training. But the strange thing was that it didn’t hurt at all and the swelling had gone in the morning. It swelled up again during the day. My coach and I did not understand what was happening. I felt that I had to make a lot more effort, whether jumping or chasing the ball on the field. This is where my journey of visits and hospitalization began. Within a few months, lymphedema affected the entire right leg, starting from the bottom up. I got no advice about bandaging or compression. Almost 2 years later, using an old form of lymphoscintigraphy they found out that I was born with hypoplasia of the lymph nodes and lymph vessels in my lower body. About 2 years ago, the left leg also started to swell.

How does lymphedema impact your everyday life/routine? How does it impact your career or activities?

When I wake up I must take the time to bandage both legs or put on compression stockings. Long periods sitting at a desk or in a car or standing builds up painful pressure in my legs. I really need to raise my legs when this starts to occur. It is hard for me to find work where I am not subject to this pain all day without the opportunity of relief.

It is hard for me to find work where I am not subject to this pain all day without the opportunity of relief.

– Andrea Kolarikova

When I go out I do not wear clothing that will show my swelling or bandages. So no tight pants or bare legs. I’m still struggling with that. Lymphedema affects my life by wearing customized compression stockings on a daily basis, which I alternate with bandaging. During the day, I try to elevate my legs whenever possible. My wonderful husband does lymphatic drainage almost every day. I also have a compression massage device at home. I use Mobiderm Autofit or a bandage for the night, but in the summer months it is a problem for me, so sometimes when it is hot I skip night compression.

How do you feel you fit in with the lymphedema community?

For many years I lived in the belief that lymphedema occurs only rarely. Only recently, a few years ago, did I begin to realize that this was not the case, and I came into contact with many people with lymphedema, so far only through online platforms (FB, Instagram).

Have you ever met anyone else with lymphedema?

I have not personally met anyone with lymphedema yet, only through online lymphedema groups and advocates on Facebook and Instagram.

How does lymphedema affect your close friends/family members/relationships, if at all?

My close family take my lymphedema as part of me, it doesn’t affect us in any way. It limited me especially at a time when my sons were little kids and I couldn’t do everything with them that I would do if I didn’t have lymphedema (especially all sports activities). This period was probably the most mentally demanding for me. 

It limited me especially at a time when my sons were little kids and I couldn’t do everything with them that I would do if I didn’t have lymphedema (especially all sports activities). This period was probably the most mentally demanding for me.

– Andrea Kolarikova

As for my friends, until recently, only a few of my closest friends knew that I had lymphedema. There is very little awareness at all here in Slovakia about what lymphedema is and how it manifests itself. Amongst my friends, I started talking about it only 2-3 years ago.

Neither my colleagues at work nor my bosses knew I had lymphedema. I didn’t feel comfortable talking about it. This limited me at work and in socialising. 

What kind of treatment do you undergo for your condition?

I wear custom made compression stockings of compression class III., I alternate circular knitting (Thuasne) with flat knitting (Juzo), night compression Mobiderm Autofit or bandages, I have a device for compression massage at home and manual lymphatic drainage from my husband. I would not get all this in proper quality and intensity in medical facility here in Slovakia covered by insurance. 1-2 times a year I visit my new angiologist 40 km away, who prescribes my annual compression stockings. Of course, my compression consumption is much higher during the year, for which I have to pay.

What do you wish others knew about your condition?

That if I can manage regular self treatment my condition is bearable. Without this it worsens. 

How often do you discuss your condition with those outside of the lymphedema community, if at all?

Only if the topic comes up. 

What has your experience been with the health care system?

My experience is that in Slovakia patients are in most cases still treated as patients with a vascular problems. My local angiologist was like this. Doctors still have little knowledge about the treatment of lymphedema. The psychological aspect of your condition is ignored. If you don’t have elephantiasis, it’s still just a cosmetic problem, according to them.

Doctors still have little knowledge about the treatment of lymphedema. The psychological aspect of your condition is ignored. If you don’t have elephantiasis, it’s still just a cosmetic problem, according to them.

– Andrea Kolarikova

It is very difficult to find and get to the right doctor. As for the treatment of lymphedema in medical facilities, it is at a low level, or not at all. You have to look for private treatment, which is financially unbearable for most patients. In general in Slovakia insurance companies cover only a low percentage of treatments and aids for this condition. 

What would you like to see for lymphedema within the next few years?

Increasing knowledge of lymphedema in our doctors, associated with early diagnosis, adequate and affordable treatment paid for by insurance companies. 

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

It is time to establish a lymphedema community here in Slovakia and hear our voice. Great challenge!

It is time to establish a lymphedema community here in Slovakia and hear our voice. Great challenge!

– Andrea Kolarikova
Instagram: @andrea.kolarik

Amy Rivera

Amy Rivera is the executive director of Ninjas Fighting Lymphedema. As a primary lymphie who was misdiagnosed and isolated for over 30 years, Amy established this foundation in order to give the lymphedema community a voice.
The following was submitted by Amy Rivera (@thisisamyrivera):
What has your experience been with lymphedema?

I was born with primary lymphedema. It started from birth. The entire right side of my body was twice the size of my left side. The swelling went down after a few days except for my right leg, which stayed swollen.

How does lymphedema impact your everyday life/routine? How does it impact your career or activities?

Before 2013, I never met anyone with lymphedema nor did I know that was what I had. I hid my leg from everyone. I made excuses as to why I wouldn’t participate in activities such as camping etc. I even entered a beauty pageant in hopes to change my identity. I was a nurse at one point, but due to the swelling, I couldn’t work anymore. This shattered my heart. All I ever wanted to do was to help people and I was lost after I had to give up my passion. Once I was diagnosed, I began to open up about my leg and dropped the skirt and started wearing pants.

All I ever wanted to do was to help people and I was lost after I had to give up my passion. Once I was diagnosed, I began to open up about my leg and dropped the skirt and started wearing pants.

– Amy Rivera

This led to me skydiving, swimming, working out and living life. The complete opposite of who I was. 

Have you ever met anyone else with lymphedema?

I met someone like me in 2015. This was the first time I ever met someone with lymphedema. The picture is attached below. This was an emotional experience for me. I finally felt at peace knowing I didn’t cause this, that my mother didn’t cause this and that there were others like me.

I finally felt at peace knowing I didn’t cause this, that my mother didn’t cause this and that there were others like me.

– Amy Rivera
How do you feel you fit in with the lymphedema community?

I respect the lymphedema community because I understand what drives it. I understand the sense of community, compassion and safety net it can be for people. I’m also aware of the dangers it can bring such as negative judgments from the lack of knowledge and etc. You will find this in every community, not just the lymphedema ones. It is the nature of the social media beast. Just be aware. I personally have a different view from most. I see the community in a patient view, Executive Director view and a philanthropist view. Hence, why I started Ninjas Fighting Lymphedema Foundation. 

What kind of treatment do you undergo for your condition?

I had the LNT in 2013. This surgery wasn’t as successful as it could have been due to the amount of fibrotic tissue. We don’t know what we don’t know and this was a newer procedure at the time. I knew this going in and I offered to be the guinea pig. That’s how desperate I was for relief. In 2016, I had my first Suction Assisted Protein Lipectomy (SAPL) with a doctor here in St. Louis who is no longer practicing. I saw little to no change. In 2018, I finally made it to the doctor that changed my life. I had the SAPL with Dr. Granzow. He removed the fibrotic tissue, 16 inches of dead skin and gave me a life I dreamt of. Do I recommend this approach? No. We are much further along now and there are several resources out there to help you with the decision process for surgery. I should’ve gone to Dr. Granzow from the beginning. I wear a class 2 and class 3 custom compression garments. I still see my therapist as a health routine more than anything and I wear night time garments. Just because I have the surgery doesn’t mean I’m cured. That is the biggest misconception people have.  Surgery gave me a pain free life not a cure. 

What do you wish others knew about your condition?

I wish everyone understood the dangers of developing lymphedema. You don’t have to be born with it or develop cancer to have it. It can arise from any form of injury, infection, bug bites and etc.

You don’t have to be born with it or develop cancer to have it. It can arise from any form of injury, infection, bug bites and etc.

– Amy Rivera

Please see an interview with a patient we helped. She developed it from being pushed down a flight of stairs.

How often do you discuss your condition with those outside of the lymphedema community, if at all?

I’m a walking billboard for lymphedema. I live, work and breathe the word. I educate family members, friends and strangers. A few doctors here and there as well. My goal is to educate others regarding the risk of not understanding the malfunction or missing lymphatic system. After all, everyone is supposed to have a lymphatic system and they need to know what it does just as they know what the heart does. They are equally important for survival. 

What has your experience been with the health care system?

You really don’t want my answer regarding the healthcare system here in the United States. I’m not pleased with it at all. 

What would you like to see for lymphedema within the next few years?

I would like to see 7 billion people understand what the lymphatic system does just as they do with other systems in our bodies.

I would like to see 7 billion people understand what the lymphatic system does just as they do with other systems in our bodies.

– Amy Rivera

I work closely in the lymphedema community but it is time to educate outside of that community as well. We must be brave enough to share our pictures, stories and voices in order for this to happen. That is where my focus is at the moment. 

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

Yes, I’m involved with several lymphedema groups, communities and other non profits. If we work together, we can reach a vast number of people. 

How do you feel about the lymphedema community? What are its areas of strength? Are there any areas that need improvement?

I love the private groups but I must admit I get sad when lymphedema fighters are too afraid to share publicly. I completely understand why they feel uncomfortable and unsafe to do so but my heart breaks for them. I remember being there and when you open up, there is a sense of freedom. This is even more of a reason to share my journey. Again, we must be brave. 

I remember being there and when you open up, there is a sense of freedom. This is even more of a reason to share my journey. Again, we must be brave. 

– Amy Rivera
What needs are underserved in the lymphedema community? What kind of people do you feel are underrepresented or under appreciated?

Therapists are often underutilized. They are our first responders. This is why Ninjas Fighting Lymphedema just recently partnered with LANA and KLOSE training to help therapists become certified. I never felt misunderstood. This goes back to respecting the online community. You must be aware of what you say or type when replying to others. Remember, their journey isn’t yours so they may not be where you are. 

Instagram: @thisisamyrivera @ninjas_fighting_lymphedema
Website: winourfight.org

Cam Ayala

Cam Ayala is a lymphedema patient, advocate, and compression therapy consultant. After appearing on season 15 of the Bachelorette and season 6 of Bachelor in Paradise, Cam has used his social media platform to raise awareness for his chronic condition.
The following was submitted by Cam Ayala (@camronayala):
What has your experience been with lymphedema?

I was born with lymphedema but my swelling did not start until I was 11 years old after I had a bone biopsy on my right knee. My swelling is concentrated to my right leg slightly above the knee up to the hip.

How does lymphedema impact your everyday life/routine? How does it impact your career or activities?

Lymphedema does not take any days off, so it is a constant battle against gravity to make sure the fluid is moving upwards. This requires daily maintenance of several different compression modalities ranging from aquatic therapy, Compression garments, and using a compression pump like the LymphaPress. Because I have had several bouts of cellulitis and other infections in my right knee it is required me to be extremely compliant with all of these items in my compression ecosystem. I also have to be mindful of not standing too long on my feet but also still moving enough to not allow my muscles to weaken.

How do you feel you fit in with the lymphedema community?

Given my profession as a Compression Therapy Consultant for Lympha Press and the social platform that I have, as well as my ambassador role with LE&RN – Promoting and serving the Lymphedema community is a daily routine for me.

Promoting and serving the Lymphedema community is a daily routine for me.

– Cam Ayala
Have you ever met anyone else with lymphedema?

Yes, with my new profession I get to meet fellow Lymphedema patients every single day.

How does lymphedema affect your close friends/family members/relationships, if at all?

It has impacted past relationships because when you are recovering from major surgeries as a result of your lymphedema, your loved ones become more so your caretakers. I also have to be careful about who I decide to date or let into my personal life as they may not be adequately prepared to handle being with someone who has a chronic disease like Lymphedema. Most of my very close friends are very understanding with some of the physical limitations that I have due to my lymphedema.

What kind of treatment do you undergo for your condition?

I perform self manual lymphatic drainage, as well as see a certified Lymphedema therapist about once or twice a month. I enjoy aquatic therapy in the pool, I wear a 20 – 30 mmHg compression garment during the day, the JoviPak nighttime garment, and use my Lympha Press pump every evening to manage my lymphedema.

What do you wish others knew about your condition?

I wish the other people knew that it is not a cosmetic condition but a chronic disease with no current cure.

I wish the other people knew that it is not a cosmetic condition but a chronic disease with no current cure.

– Cam Ayala

Though it may not appear that my entire leg is swollen all the time, I do experience daily pain that I have learned to Mask.

How often do you discuss your condition with those outside of the lymphedema community, if at all?

With my new role as a compression therapy consultant, I talk about lymphedema every single day with physicians, certified lymphedema therapist, and with other Lymphedema patients.

What has your experience been with the health care system?

Fortunately, growing up in Houston, Texas I have been able to access any of the top wound care and lymphedema specialist, but it still took me over a year and a half to get my ignition all diagnosis of Lymphedema when I was 11. I’ve had several highly reputable orthopedic oncologist from the year 2014 through 2017 miss diagnosed me with chronic osteomyelitis and wanted to perform and above the knee amputation without considering my pre-existing condition, and lymphedema.

What would you like to see for lymphedema within the next few years?

Better insurance coverage for garments, pumps, and treatment such as surgeries and MLD sessions. Though a cure would be ideal, it is not realistic for the for seeable future because it is a very complex condition but does not have a considerable amount of research dedicated to the short and long-term success of treating this disease.

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

Yes, LE&RN, Brylan’s Feat Foundation, CampWatchMe, Lymphedema Seminar, American Vein & Lymphatic Society, LymphieStrong, Lymphedema Facebook Group, National Lymphedema Network.

How do you feel about the lymphedema community? What are its areas of strength? Are there any areas that need improvement?

Overall there is still a lot of misinformation part of it is what is being trained at the certified lymphedema therapy schools. We need more clinical studies and research/curriculum being presented to all medical school students as well as early as high school biology.

We need more clinical studies and research/curriculum being presented to all medical school students as well as early as high school biology.

– Cam Ayala

There are great support groups online repeople can vent and gather inspiration from one another so that momentum needs to carry-on.

What needs are underserved in the lymphedema community? What kind of people do you feel are underrepresented or under appreciated?

The underserved or the elderly patients who have been misdiagnosed a vast majority of their life or the patients who have been diagnosed but do not have good health care/insurance coverage because Lymphedema requires constant maintenance which can be very expensive for treatment and garments.

Instagram: @camronayala

Alison Penuel-Mahoney

Alison Penuel-Mahoney is a primary lymphie making sure other lymphedema patients don’t feel that they are alone in their struggles by discussing self-confidence and proper at-home treatment online.
The following was submitted by Alison Penuel-Mahoney (@alimahoney3):
What has your experience been with lymphedema?

I was diagnosed with Lymphedema when I was 17 years old.
I had a swollen left ankle and my sister said “I never thought you had cankles” which then I responded well it’s just one and I’m not sure why it’s swelling up like this because it doesn’t hurt. Then I told my parents and went to the doctor. After about 3-5 months Lots of doctors offices, poking and prodding and I was finally diagnosed with lymphedema. That was in 2004, I’ve had Lymphedema for going on 16 years.

How does lymphedema impact your everyday life/routine? How does it impact your career or activities?

My positive self always said, “It hardly affects my life,” but truly I have spent hours upon hours of the past 15 years learning how to care for myself.

My positive self always said ‘It hardly affects my life,’ but truly I have spent hours upon hours of the past 15 years learning how to care for myself.

– Alison Penuel-Mahoney

I’ve moved around to different cities for different jobs or for my husbands work. In each city I have had to research and find a new Lymphedema therapist. In some cities are easier than others but it’s always a challenge! Most recently it took me about 6 months which was the longest process thus far.

Everyday I get up unwrap my leg from the night before and put a new stocking on, most mornings I work out, then new stocking after a shower, and then some days I’m more swollen so I’ll wear an extra Garment, wrap or wear a circaid bc the bottom half of my leg tends to swell more. Then when I’m done with work and home for the night I try to pump my legs (lymphapress pump)
In total On days I pump it takes me about 1.5 hours with everything combined. It’s a pain but I’ve had this for so long and figured out what works for me so yes it’s a lot of time but it’s better for me to dedicate the time to my leg than to let it go and try to make up for it later … which we all know doesn’t work.

How do you feel you fit in with the lymphedema community?

I have no clue. I just live my regular life and try to share with others to try to help them. I was diagnosed when there was no “social media” so I felt very alone and had to overcome a lot of embarrassment… and someone can see me being strong/confident and if it helps them be strong and confident and do things to take care of their leg then I feel like I’m doing something right with my life. I just don’t want others to feel so alone like I did.

I just don’t want others to feel so alone like I did.

– Alison Penuel-Mahoney
Have you ever met anyone else with lymphedema?

Yes! I have made a point to reach out to others and see if they will meet up with me! So far in person I have met 5 people an older woman when I wa s first diagnosed- she had bilateral lLymphedema in her legs, then I met a girl in NYC with it who had just been diagnosed, then I met a girl locally where I live now, and I met Amy Rivera who started ninjas fighting Lymphedema; she does a ton with the LE community. She has a very interesting story and is very inspiring! And I met two other girls out in LA while I was there for my consultation with Dr. Granzow. I have met others over the internet which is a lot more!

How does lymphedema affect your close friends/family members/relationships, if at all?

My family is supportive and my husband is soooo supportive which is great. Even when I have bad days and cry about it he still is a great cheerleader and helps me along.

What kind of treatment do you undergo for your condition?

MLD, CTD usually about once a year or every other year. I have SAPL surgery scheduled with Dr. Granzow on March 4th so I’ve been prepping for that. Mostly just trying to keep my swelling down.
I wear a juzo custom flat knit stocking. It keeps my leg down so much better than circular knit I wish I switched years ago. I also have a Jobst Relax night time garment which I really like bc it’s so soft and doesn’t irritate my skin.

What do you wish others knew about your condition?

I wish they could recognize it. “Oh that girl has compression on she probably has Lymphedema.” I wish they could make the connection, but there is such a small amount of education dedicated to lymphatics so even doctors sometimes don’t know what to do with me.

I wish they could make the connection, but there is such a small amount of education dedicated to lymphatics so even doctors sometimes don’t know what to do with me.

– Alison Penuel-Mahoney
How often do you discuss your condition with those outside of the lymphedema community, if at all?

I am open about it so if someone asks I am happy to discuss it.

What has your experience been with the health care system?

I’ve had really good experiences and really bad experiences. My husband is in the military and I am very lucky the doctors have been very caring and understanding of my condition. They have helped me find the resources I need. In addition to this our insurance is paying for surgery which I really feel so grateful for.

What would you like to see for lymphedema within the next few years?

Mostly coverage for other people. There are a ton of people I talk to who can’t get stockings paid for or the care they need. Also I like to see more doctors knowledgeable of the condition. It’s really sad when I go to the doctor and I know more about my condition than they do.

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

I am trying to be. I own my own business and keep pretty busy with that but I am making an effort to do my part.

How do you feel about the lymphedema community? What are its areas of strength? Are there any areas that need improvement?

I think as a whole it’s pretty supportive. Again I’m really not that involved so from what I’ve experienced it’s been positive.

Instagram: @alimahoney3

Mary Kastelberg

Mary Kastelberg is a primary lymphie inspiring others with her confidence and strength through her online platform LiveLoveLymphie.
The following was submitted by Mary Kastelberg (@livelovelymphie):
What has your experience been with lymphedema?

I have primary lymphedema in my right leg. I started to see an increase in swelling in my thigh when I was twelve years old, and after six months of doctors appointments, MRIs, and CT scans, I was finally diagnosed with lymphedema. Around 4 months after my diagnosis the lymphedema spread to the rest of my leg, and continued to increase in size until it was 26% larger and growing. I then sought surgery.

How does lymphedema impact your everyday life/routine? How does it impact your career or activities?

Lymphedema used to impact my everyday life quite a bit, with using a flexitouch every day for an hour to an hour and a half, bandaging my leg every night, and wearing custom garments during the day. The bandages would rub the side of my foot raw so that I couldn’t sleep because of the pain. After surgery, I wear my custom flat knit compression every day, but no longer do anything at night besides elevating. I still use a flexitouch and cupping machine occasionally, during times of increased swelling, due to the ups and downs of life. Right now, I am a senior in college, and I work as a manager of a restaurant. I have to keep my leg in mind with serving, as I am on my feet all the time, so I try and give myself some “horizontal” time after work to ease any swelling caused by standing for hours at end. As far as my activities, I always listen to my body and my leg, but I work out every day and enjoy seeing how capable I am despite my condition.

How do you feel you fit in with the lymphedema community?

It took me awhile to really see how vast and amazing the lymphedema community was. This past October (2019) I had the opportunity to speak at the National Lymphedema Network Conference: A Cerebral Experience. It was by far the most incredible experience I have ever had. So many people care about lymphedema, it brought tears to my eyes and so much hope in my heart.

Have you ever met anyone else with lymphedema?

I have met several people with lymphedema through support groups and through shadowing at a lymphedema clinic. I love meeting other people with lymphedema, and continue to look forward to meeting even more as my journey continues. It is especially nice meeting younger people, as I feel like our stories really connect and we can continuously learn from each other.

How does lymphedema affect your close friends/family members/relationships, if at all?

I think that lymphedema affects my family members in the sense that they have an appreciation for health, as well as an understanding about how important the lymphatic system truly is. They worry about me, naturally, but I think they really learned so much about caring for someone who has a chronic condition and to be grateful for everything they have. I don’t know how much my lymphedema affects my close friends and other relationships, most of the time people actually forget that I have lymphedema, and some people don’t notice it until I bring it up in conversation. Similarly to my family, I think it reminds everyone to be a little less judgmental and more sympathetic, as you never know what other people have been through.

What kind of treatment do you undergo for your condition?

I use Elvarex Custom Flat Knit thigh high stockings. I have had six procedures with Dr. Jay Granzow. These included Suction Assisted Protein Lipectomy twice, Lymphatico-venous Anastomosis three times, and a Lymph Node Transfer.

What do you wish others knew about your condition?

I wish that other people knew that while we might put on a strong confident face, there are hard days regardless. Lymphedema has been one of my biggest blessings in life and I am truly grateful to have it now, however there are still hurdles and worries that you face constantly. I wish other people could see that every bit of confidence we may seem to have we have fought for, and that if we can do it, so can they.

I wish other people could see that every bit of confidence we may seem to have we have fought for, and that if we can do it, so can they.

– Mary Kastelberg
How often do you discuss your condition with those outside of the lymphedema community, if at all?

Almost every time I meet someone where you can see my stocking I discuss lymphedema. At first upon being diagnosed I was mortified if someone asked me what was wrong. Now, I use it as an opportunity to teach others. People still ask me questions all the time and I am super open and happy to give them any information I have that they would like to know. Knowledge and understanding of others is crucial to change.

Knowledge and understanding of others is crucial to change.

– Mary Kastelberg
What has your experience been with the health care system?

The health care system currently is less than ideal. All of my surgeries were refused coverage, claiming that the surgeries were either cosmetic or investigative. As a group, we are collectively disrespected by the health care system and not taken seriously for what we go through and the consequences that can ensue if our conditions are left untreated.

As a group, we are collectively disrespected by the health care system and not taken seriously for what we go through and the consequences that can ensue if our conditions are left untreated.

– Mary Kastelberg

I truly hope this changes in the next few years to give us the help we deserve and need.

What would you like to see for lymphedema within the next few years?

I would love to see all of the above for lymphedema in the next few years. I think that we are starting to see this happen already. As for a cure, it would be incredible, but first I would love for everyone who has it to start speaking up and speaking out. There is no need to hide behind long skirts and baggy clothes. We are all beautiful and all worthy. The more we speak up, the more we are heard, and the more likely there will be an increase in research, funding, etc. There are 2.5 million of us simply in the United States, and right now we only have a small voice begging for change.

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

I am involved in the lymphedema community through social media and some events so far. As I previously mentioned, I am still in college which has inhibited me from going to as many events as I would like. However, the conference in October created such excitement for me that I hope to attend more in the upcoming years. I am involved with Camp Watch Me, and I also have a Facebook and Instagram page: LiveLoveLymphie, where I am more than happy to answer any questions or just be there to listen for my fellow lymphies.

How do you feel about the lymphedema community? What are its areas of strength? Are there any areas that need improvement?

I love the lymphedema community. I was amazed after years of feeling alone when I finally got involved. The information that is shared throughout Facebook pages and social media, and encouragement for each other is incredible. I think we should take this momentum and run for it, and I would love to see more opportunities for us to actually meet face to face and push for policy change and societal acceptance.

I think we should take this momentum and run for it, and I would love to see more opportunities for us to actually meet face to face and push for policy change and societal acceptance.

– Mary Kastelberg

I also think other countries could really use the resources and information we have here in the United States, and would love for some groups to be created to form international bonds.

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

There are so many needs in the lymphedema community. I see posts all the time of people who have been incorrectly bandaged and do not know how to treat it, or people who have skin integrity issues and are scared without resources. We need to educate people on what they have, and how to treat it by themselves in case they are not able to receive proper treatment elsewear. I think that within the lymphedema community, we should pay special attention to everyone, but particularly those with genital lymphedema or men. These people are in the minority, as many of us have lymphedema solely in limbs. I would imagine it to be especially hard for these people to talk about their specific issues, but they should receive just as much love and support as we all would love to have. I have not felt misunderstood or isolated within the lymphedema community much at all personally. From doctors, definitely. From fellow patients I feel as if my statements have always been well received and appreciated thus far.

Instagram: @livelovelymphie

Heather Evans

Heather Evans is a lymphedema specialist and chiropractor in Dallas, Texas at The Health Collective.
The following was submitted by Heather Evans (@bodyworkrx):
What has your experience been with lymphedema?

I’m a certified lymphedema therapist. I was first trained in 1997, then attended the Foldi Clinic advanced class in 2008. I worked full time as a lymph therapist in and outpatient and inpatient hospital from 1997-2002, when I started my own private business called Bodywork RX Inc. I still spend 80% of my day treating lymphedema and lymphatic conditions and the other 20% I’m a chiropractor working with musculoskeletal alignment.

How does lymphedema impact your everyday life/routine? How does it impact your career or activities?

It is my career. I spend every day thinking about it and talking about it.

How do you feel you fit in with the lymphedema community?

Professional and advocate. My main focus is teaching people the anatomy of the lymphatic system and how it works, so that they can better understand the “why” behind the treatments and the things that influence swelling.

My main focus is teaching people the anatomy of the lymphatic system and how it works, so that they can better understand the ‘why’ behind the treatments and the things that influence swelling.

– Heather Evans
What has your experience been with the health care system?

It’s better than nothing, but it’s not enough. Many people cannot find a lymphedema therapist near them at a hospital or outpatient clinic. When they do their insurance doesn’t cover enough treatments.

What would you like to see for lymphedema within the next few years?

Unfortunately, I don’t know that there will truly ever be a cure because the reasons that people develop lymphedema vary so widely. However, It would be wonderful if some of the more prevalent reasons could be fixed. I think that the BIGGEST improvement would be to change the way lymphedema is classified within the health insurance payment system.

I think that the BIGGEST improvement would be to change the way lymphedema is classified within the health insurance payment system.

– Heather Evans

Right now, when a person goes to therapy for lymphedema treatment that payment structure only pays for volume (circumferential) reduction of the limb. Once that reduction has reached a plateau, the therapy visits end. There is not payment for maintenance. If lymphedema could be classified more like diabetes so that health insurance would pay 1. To get it under control then 2. Keep it under control. This would mean paying for regular MLD and compression garments.

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

Yes, I have done work with the lobby days for the Lymphedema Treatment Act

How do you feel about the lymphedema community? What are its areas of strength? Are there any areas that need improvement?

The lymphedema community has come a long way. I remember the days before Facebook groups and blogs, where people only had a small circle of others to talk to and relate with.

The lymphedema community has come a long way. I remember the days before Facebook groups and blogs, where people only had a small circle of others to talk to and relate with.

– Heather Evans
What needs are underserved in the lymphedema community? What kind of people do you feel are underrepresented or under appreciated? Have you personally ever felt misunderstood or isolated within the community?

I think the minority outreach could be better. I would also like to see more functional medicine physicians take an interest in lymphedema and lipedema because there is so much that is diet and supplement based that could be helpful, but patients physicians just don’t get an education about that.

I would also like to see more functional medicine physicians take an interest in lymphedema and lipedema because there is so much that is diet and supplement based that could be helpful, but patients physicians just don’t get an education about that.

– Heather Evans

I would like to see a “Lymphedema Doctor” or “lymphologist” be a specialty like Cardiology and dermatology are choices in Medical Schools.

Instagram: @bodyworkrx
Website: bodyworkrx.net

Joshua D. Morrow

Joshua D. Morrow is a primary lymphie living in Central Arkansas. After developing lymphedema at age 23, he went through years of self-isolation before opening up about and embracing his condition.
The following was submitted by Joshua D. Morrow (@lymphedema.dude.joshua):
What has your experience been with lymphedema?

I was 23 when I developed lymphedema. I thought I’d sprained my left ankle playing basketball. I would spend 3 weeks trying to care for it like it was sprained with the swelling getting worse. By the time I went to see a doctor my leg was swollen from my knee down to my toes.

It took a couple months of doctor visits with X-rays and other tests. I was recommended to a specialty clinic at the UAMS Medical Center In Little Rock. Once I was there I saw a endocrinologist. It took her less then 10 minutes to diagnose me with primary lymphedema. I was glad to know what I had; unfortunately, I wasn’t told much on taking care of it. I was told things weren’t going to go away, I would have to wear a compression garment from now on to keep it elevated when not up on it.

After my diagnosis, I went through many years of self denial and depression. I hid from the world and lost touch with most of my friends during this time.

I hid from the world and lost touch with most of my friends during this time.

– Joshua D. Morrow

I stopped doing many things used love to doing. At the time was a skateboarder and rode BMX bikes all the time; I quit both of them.

Now things are very different. I’m pretty open about having lymphedema. No longer hide with baggy pants or avoiding going out in public.

Now things are very different. I’m pretty open about having lymphedema. No longer hide with baggy pants or avoiding going out in public.

– Joshua D. Morrow
How does lymphedema impact your everyday life/routine? How does it impact your career or activities?

I don’t think about it all the time; some days though I can’t avoid it. Like a lot of lymphedema suffers I experience pain in my lower legs. Most of the time it’s bearable I’ve gotten use to it then there’s days where the pain is severe. These are the days I hate pain is a huge drain on me; it’s all I can concentrate on. I’m not very productive on these days.

I wear OTC compression every day living in southern U.S. the summers get really hot wearing them that time of year is rather uncomfortable. Doing things outdoors is very limited by the heat.

Doing things outdoors is very limited by the heat.

– Joshua D. Morrow
How do you feel you fit in with the lymphedema community?

I personally feel that I fit in pretty well with the lymphedema. Most because I’ve become pretty outspoken about having lymphedema.

What kind of treatment do you undergo for your condition?

Besides wearing over the counter compression garments self treatment. I’m currently not undergoing any treatment.

What do you wish others knew about your condition?

This condition isn’t cause by being overweight and if you just lose the weight it would go away. Yeah it doesn’t work like that.

This condition isn’t cause by being overweight and if you just lose the weight it would go away. Yeah it doesn’t work like that.

– Joshua D. Morrow

You can come up to me and ask about my legs I’m willing to talk to you about it.

How often do you discuss your condition with those outside of the lymphedema community, if at all?

I have discussed it outside of the community but not as often as I would like.

What would you like to see for lymphedema within the next few years?

A cure is the brass ring of course but I feel that’s still some time before we have that. More realistically, I’d like to see more research and more accurate representation in the media. I feel it hasn’t reflected the community in an accurate way in what we seen so far.

I’d like to see more research and more accurate representation in the media. I feel it hasn’t reflected the community in an accurate way in what we seen so far.

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

I have been involved with a few fundraising efforts. To date though all involvement has been online I’m hoping to get more in life involved though.

How do you feel about the lymphedema community? What are its areas of strength? Are there any areas that need improvement?

The community is great. We are doing a good job of getting awareness spread. I, however, feel its focus is too much on breast cancer related lymphedema. Other voices get drowned out when trying to raise awareness and support.

Other voices get drowned out when trying to raise awareness and support.

– Joshua D. Morrow
Instagram: @lymphedema.dude.joshua

Berlange Presilus

Berlange Presilus is a fashion model who developed lymphedema after surgery for Klippel Trenaunay Syndrome.
The following was submitted by Berlange Presilus (@bellenge):
What has your experience been with lymphedema?

My experience with lymphedema has not been so bad at all in comparison to those with primary lymphedema. I developed lymphedema right after surgery. Those surgeries were intended to help with Klippel Trenaunay Syndrome.

How does lymphedema impact your everyday life/routine? How does it impact your career or activities?

It sucks! Seemingly harmless activities sometimes put me in a vulnerable condition. I avoid lifting, walking long distances and standing for a long period of time. Being a fashion model, lymphedema also restricts my ability to withstand shooting for a couple hours straight.

Being a fashion model, lymphedema also restricts my ability to withstand shooting for a couple hours straight.

– Berlange Presilus

Sometimes it’s really tiring after a few poses (I like to jump and twirl).

How do you feel you fit in with the lymphedema community?

To be honest, I love that I am part of the conversation and I feel very privileged. Although I have received some backlashes about not fitting in because of the severity of my lymphedema, I feel right at home. I am owning the space and raising awareness the best way I can. Together, we are one.

I am owning the space and raising awareness the best way I can. Together, we are one.

– Berlange Presilus
Have you ever met anyone else with lymphedema?

Yes! Quite a lot of people. I recently did a presentation at the Canadian Lymphedema Conference, held in Toronto, Canada.

How does lymphedema affect your close friends/family members/relationships, if at all?

It doesn’t anymore. They are managing just as I am.

What kind of treatment do you undergo for your condition?

I do light exercises and often massage my leg. Everynight I elevate my affected leg for 15 to 20 minutes before bed. I wear compression stockings 7 days a week for at least 95% of the day. I wear Jobst thigh highs.

What do you wish others knew about your condition?

It’s not contagious and lymphedema doesn’t define me.

How often do you discuss your condition with those outside of the lymphedema community, if at all?

I speak of lymphedema every chance I get. I feel like it is my duty to speak as much and as loud as I can until everyone gets the help they deserve.

I feel like it is my duty to speak as much and as loud as I can until everyone gets the help they deserve.

– Berlange Presilus
What has your experience been with the health care system?

(Deep sigh). Long story short, I have not been so lucky. My experience with the health care both in the U.S and Canada has been terrible. I am actually terrified of the thought of visiting the doctors.

What would you like to see for lymphedema within the next few years?

I would love to see more people owning their truths outloud and speaking out. That will eventually encourage the changes we hope to see (media coverage, research, representation and the ultimate goal …..A CURE).

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

Yes, both lymphedema and Klippel Trenaunay.

How do you feel about the lymphedema community? What are its areas of strength? Are there any areas that need improvement?

I feel like there’s more to be done in terms of raising awareness and supporting each other. But the more we talk about lymphedema, the more people we can help understand it and potentially even have it diagnosed. I think the more awareness being raised, all the more others will feel empowered to also use their voices. Lastly, the more medical attention we will receive.

I think the more awareness being raised, all the more others will feel empowered to also use their voices.

– Berlange Presilus
Instagram: @bellenge

Monique Samuels

Monique Samuels is a primary lymphie who has created her own space in which she inspires others living with chronic disorders to live life to the fullest.
The following was submitted by Monique Samuels (@chronicallymoni):
What has your experience been with lymphedema?

At the time I am writing this I will have lived with lymphedema for 22 years. It blows my mind to think of that 12 year old version of myself devastated, hopeless and lonely. When my lymphedema developed I was at the cusp of being a teenager, preoccupied with what other people thought of me, how I looked what boys would think. I was still learning who I was in the world.

When my lymphedema developed I was at the cusp of being a teenager, preoccupied with what other people thought of me, how I looked what boys would think. I was still learning who I was in the world.

– Monique Samuels

It all started with a simple field trip to a skating ring. I somehow sprained my right ankle that day, a few weeks later my right leg started to have pitting edema, then a few months later my left leg started to swell as well. I went to several hospitals in the New York area; it took a resident doctor in the emergency department to suggest a diagnosis of Lymphedema. He suggested I go to the Learner Lymphedema Center in NYC. The next week my mother took me and I was officially diagnosed with Primary Lymphedema.

I have primary lymphedema in both my legs. I was able to manage it for many years; it was hard and time consuming, but I was able to manage it since I was a child and had little to no responsibility outside of homework and helping around the house.

I hid myself. I quit doing a lot of the things I loved to do. I was a swimmer, I quit swimming. I was in the marching band, I quit marching. I did dance, I quit dancing. I didn’t want to be seen, and I did not want people to ask me questions. I was embarrassed and had no one else who looked like me or was my age to show it could be normal, that it would be okay.

I was embarrassed and had no one else who looked like me or was my age to show it could be normal, that it would be okay.

– Monique Samuels

As time went on, I transitioned to college. I was trying to find out who I was a person and also wanting to lead a normal life without lymphedema. I stopped wrapping my legs, wearing my compression garments, going to MLD therapy. My legs got so big I could barely walk. I developed cellulitis; I would have 10 episodes of it on average in a year.

I got sick and tired of being sick and tired. So I decided to take action. I started back doing therapy (thank God for health benefits). I started doing my own research to see if there was any new information on lymphedema. Honestly, there was not much. For years I heard no surgery would help; there was no research anyone I had contact with could interpret or recommend to me.

I was doing therapy, but my legs would get back to where they were in no time. It takes so long to get my garments after therapy, and each fitting during that time if I had garments, they were old and ill fitting, or I had none I could wear. My swell rate is very fast, so it was a circular frustrating process.

I found a surgeon who could help cut off skin and tissue that had over grown on my legs to help me get as close to normal shaped leg and eliminate the extra pocket for lymphatic fluid to fill.

Living with lymphedema, I never see anyone that looks like me represented in anything. So I created my own space to share with everyone who has lymphedema and any chronic disorder that life can be happy and joyous.

Living with lymphedema, I never see anyone that looks like me represented in anything. So I created my own space to share with everyone who has lymphedema and any chronic disorder that life can be happy and joyous.

– Monique Samuels

I created a YouTube channel Chronicallymoni to share my story and how I manage life with lymphedema. I share how I had to be my own advocate for my health and do my own research to get the care I know I needed.

I have come to learn that living with lymphedema does not have to be a burden. I had to choose happiness and I had to make changes on how I saw myself and how I show up in the world. I appreciate the lessons having lymphedema has taught me. I am a better human being for it.

I appreciate the lessons having lymphedema has taught me. I am a better human being for it.

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

The lymphedema community really doesn’t shine light on teens and young adults, people who did not acquire via complications of cancer.

Lymphedema costs are so high. No one talks about the ongoing maintenance that is needed and how much that costs.

Instagram: @chronicallymoni
YouTube: Chronicallymoni

Alex Gleditsch

Alex Gleditsch is a primary lymphie and father. He often feels as though he can’t speak about his condition as very few people understand it and its impact on daily life.
The following was submitted by Alex Gleditsch:
What has your experience been with lymphedema?

My experience has been a painful one. My feet always hurt. I can’t let anyone know why my feet hurt so they think I’m just weak and if I do say so then there is mockery. I always wear pants (even in the summer) because I don’t want to deal with the stares, the questions or the laughter. Although recently I have started wearing shorts out in public.

I can’t let anyone know why my feet hurt so they think I’m just weak and if I do say so then there is mockery.

– Alex Gleditsch
Have you ever met anyone else with lymphedema?

I have never met anyone outside of my aunt, cousin and my sister. So I have always thought lymphedema was a rare condition.

What has your experience been with the health care system/doctors?

The doctors at the hospital when my sons were born had no clue what lymphedema is and said that I didn’t know what I was talking about running test after test costing my hundreds of dollars only to find out that they didn’t know anything and I was right. They have said they would have to do “research” to find look into it more. Doctors in my experience have no clue about our condition.

[Doctors] said that I didn’t know what I was talking about running test after test costing my hundreds of dollars only to find out that they didn’t know anything.

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

 The only way it affects my wife and children is my children have it (genetically because I have it genetically) and my wife has to deal with my insecurities which can be a bit much, even though it’s kind of getting better.

I wish people knew the pain. Not just physical but also emotional. I don’t really talk to people about it at all. I don’t like drawing attention to myself. 

I wish people knew the pain. Not just physical but also emotional.

– Alex Gleditsch
What kind of treatment do you undergo for your condition?

Other than compression leggings a couple times a week there isn’t much I do. I haven’t gone and talked to a doctor because I don’t want to waste time and money on them telling me what I already know. Which is elevate your feet.

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

I didn’t really know there was a community to fit into let alone be an active part of it, or even fix problems or praise that would be worth mentioning.

What would you like to see for lymphedema within the next few years?

I would love to see more research for a cure or something to lessen the swelling , something I could do to make it go away.