FIGHTING FRIDAYS
Fighting Fridays is where we show appreciation and recognition to the people who are fighting Lymphedema everyday and want to tell their story. Your voice will be heard!
Laura’s Story
Take aMy name is Laura and I am a cancer survivor and secondary lymphedema patient. In 2019 I was diagnosed with Synovial Sarcoma in my right leg and underwent aggressive treatments of chemotherapy, heavy radiation and so many surgeries that honestly I am beginning to lose count.
I was never told I had lymphedema by my doctors. The first time I had even heard of it was from my at-home Physical Therapist during a post-op session when she asked me “How are you managing your lymphedema?”. Naturally, I was surprised and caught off guard so immediately turned to Doctor Google to better understand what she was talking about. By the way, I do not recommend doing this until you’re in the right state of mind because the internet, especially for medical patients, is a very scary place. When I asked my surgeon about this in our next follow-up appointment, she confirmed that I had lymphedema as a result of the amount of treatment (radiation) and surgeries I had to remove a Synovial Sarcoma tumor from my right leg and that she recommends I work with a physical therapist to manage it. And that was it, I was now both a cancer patient AND a lymphedema patient.
They say that cancer survivorship is sometimes even harder than getting through the grueling treatments, and for me that could not be more accurate. Some might think that after being diagnosed with cancer and fighting for my life, that everything else would seem minor, that I should be able to keep perspective of all that I have to be grateful for (like still being here). But I was devastated at all that cancer had robbed from me and the mutilated body I was left with. When I was diagnosed with lymphedema and when I learned it was a progressive disease that if left untreated, could lead to fatal infections, I was scared and angry all over again. I threw myself into research and tried to learn everything I could about lymphedema. I found a CLT nearby who began working with me 2-3 times a week for months and months on end. We did several rounds of decongestive therapy, I learned to bandage my leg and wore the bandages day and night for months at a time and repeated this over and over. I ordered a FlexiTouch Pump, a Tribute night garment, and several types of custom compression garments (to my PT’s surprise increasing the compression class as high as I could). I found two amazing people on Instagram who motivated me to learn that I could move and workout again. They motivated not only me and each other, but SO many others to move their bodies as part of their own lymphedema management (#sweatchecks!!). I found an amazing community of other lymphedema patients (lymphies!) and also care providers who share so much information, so many tips on various treatments and resources.
I learned that I was very privileged and extremely lucky to have the resources I did to treat my lymphedema. But even knowing this, I still shamefully have been in denial. During the 17 hour surgery in January of 2020, my surgeons had removed my tumor and also my femoral vein because the tumor has crushed and collapsed it. So I thought that while I knew the swelling in my leg was at least partially due to lymphedema, what if I could regain some functionality and reduce my pain if they just…put in a new femoral vein back in my leg? So, this past August and September I underwent 4 surgeries to place a vein graft bypass and several stents to keep the graft open. After many complications, I was admitted into the ICU for a week and had over 20 blood transfusions as I once again fought for my life. Ultimately, all the surgeries were unsuccessful and the vein graft failed again and again and I had to come to terms with the fact that this wasn’t working.
I know I still have a long way to go as I am still recovering from these surgeries and to be honest from the last few years, but I take so much comfort in the community that I found online with my fellow lymphies. Crisis of any kind can turn your life upside down but I have been SO lucky to learn that with each one, there is always something good that comes from it. For me, the lymphedema community is one of those lights in the darkness that has pushed me to pick myself back up and keep fighting.
Debra’s Story
In 2016 I noticed swelling in my right thigh. I was a runner who biked everywhere around town and regularly attended Bar Method classes. To say that I enjoyed physical activity was an understatement. The swelling pitted, was mildly tender, but was otherwise localized. It bothered me a bit, particularly when wearing pants or bermuda shorts. I didn’t delay getting it checked out, but that started a year-and-a-half journey of diagnosis diving and the extension of my swelling up to my hip and down to my toes. I saw more doctors than I can count; had more tests and imaging done than I’d like to recount; and heard more times than I’d care to remember: “you’re fine.” Until I saw the physical medicine and rehabilitation doctor who ultimately said “just try complete decongestive therapy (for lymphedema).”
I tried it and my leg slowly started to reduce, but it never quite came back to what it was. Between the bandaging and compression garments I felt self-conscious and… broken. Though I was starting to get a handle on managing the condition and pain associated, the maintenance protocols (i.e. compression garments and bandages) felt mentally debilitating. I suffered from dysmorphic thoughts, anxiety, constant conversations with curious strangers, and the endless search for normalcy.
Knowing that compromising compression wasn’t an option for me, I knew I needed to both wear the compression garment (or bandages)… yet also leave the house feeling comfortable and confident. It was through this realization that I created a one-legged legging (Stemwear!) to cover-up my compression garment. Though simple, the act of putting on a bold and fun pattern to compliment my outfit – creating an instant fashion statement – made me feel happier and gave me a choice in how I looked that day.
Six years post diagnosis that one-legged legging cover-up has grown into a fashion apparel brand that has introduced me to so many people looking to stand out, stand strong, and stand proud with their style.
Valeria’s Story
My name is Valeria I live un Buenos Aires Argentina. I’m 50 years old and my lymphedema began to show signs 16 years ago on my right leg only. I was dancing salsa at that time (now I still salsa and also tango), and my right dancing shoe didn’t fit.. my foot first started swollowing and then my hole right leg. I couldn’t understand what was going on! Suddenly this happened! Visited doctors who didn’t know what was going on.. very frustrating.. one year after, in a visit to my family in port ángeles , my sister in law took me to consult a physiotherapist and she was the one who told me it was primary lymphedema.. came back to Buenos Aires and started compretion treatment and a lymphatic study informed I had lymphedema stage 3 in both legs, but upto that moment only de right leg showed symptoms. Exercise, compression, manual drenaige, diet, skin care.. began to be part of my daily life. On april 2021 with my first COVID, my left leg suddenly began to show signs and symptons Of lymphedema too. So now.. both legs with lymphedema and in treatment . My worst “enemy” are the infections I regularly suffer, now, in both legs . But Even if sometimes it feels like “ok, enough!!” And I feel down and angry and worried, I breath deeply and continue with my life and routines. I work with people that have terrible deseases (I’m an Occupational Therapist and Physical education teacher working in neurológic rehabilitation clínic) so my process feels like “ok, go on, you HAVE both legs, you can walk, dance, swim.. come on”. Thanks for reading!
Kiersten’s Story
I think my lymphedema, unknowingly, began at the age of 16 with minor localized swelling in my right ankle. It didn't hurt, no sprains or fractures, so my doctor said just being a year round athlete it wasn't completely uncommon. Time then went on without it being treated. At the age of 19, while in college and playing on the NCAA softball team my right leg "blew up," per say, overnight, visibly being twice the size as the other. This happened right when the semester started, so I was not able to spend the time needed to see doctors until that summer (this was in 2014). Once the semester was over my mom attended all my appointments with me. It took nearly two dozen appointments with every specialist and testing one can think of. Checking off all the boxes as my PCP called it to rule out everything. The biggest frustration was everything came back normal and looked good (ultrasounds, CT scans, blood vessels, etc), so it would be on to the next specialist. It was obvious there was something visibly wrong with my leg and the doctors could see it, they just didn't know what it was. Finally I found a vein specialist that gave me an answer I didn't want to hear, but needless to say it was at least an answer. His words were something along the lines of, "since all the testing was normal what you have is called Lymphedema. Here is the Occupational Therapist I will refer you to. You will have this forever and she will teach you how to manage this." Not such a fun diagnosis for a 19 year old collegiate athlete with dreams of being a jockey.
Naturally in denial I spent more appointments the next year looking for second opinions and everyone gave me the same answer, "I have never heard of Lymphedema, so I can't help you. I'm sorry." I don't mention this part to undermine the doctors that told me this. I mention it simply to bring awareness to, what seems to be, the lack of attention given on the lymphatic system in medical education (in my opinion based on my experiences as a patient). The next few years I was of course in denial. So, with my parents' support they helped me through even more doctors appointments and testing. Even going as far as genetic testing. Spoiler alert: another test that came back perfectly normal. I wanted to learn about Lymphedema, but with the natural stresses of school and fighting a difficult diagnosis (physically and mentally) I had no spare time to learn how to take care of myself. So, I used my equine classes to help by getting approval from my professors to do assigned research projects on Equine Lymphedema and another project to learn how genetics work (that's what led me to my genetics interest). Fun fact: I have been in the equine industry for 9 years now and every single veterinarian I have come across has known exactly what Lymphedema is and what is needed for it. My jaw dropped when my anatomy teacher in college (a local vet) asked why my leg was wrapped and asked if I needed another chair to elevate it after I told her it was Lymphedema (the very first time I didn't get the response "what is that"). Lymphatic issues are very common in horses, so they can be commonly identified by vet's.
Almost 4 years into the diagnosis and I finally accepted it as a reality that wasn't going to go away. I was not doing the right things mentally or physically to make it any better. I realized I was only hurting myself and others around me because of the depressed attitude I had developed. I finally looked in a mirror and said I needed to start taking care of myself. I developed a routine, bandaged my leg more, rested as much as I could and fought insurance for a year for a flexitouch pump. The pump made a world of a difference! My parents talked to my sister-in-laws family about my condition and somehow through them we got valuable information that led me on my journey to my surgeries (this began in 2018. First surgery was in 2019). Three surgeries in two legs later and my "bad" leg (the right) is now smaller than my "good" leg. Because of the knowledge I was determined to acquire over the years I was thankfully able to recognize the signs very early on in my good leg (the left) to do one of the surgeries in 2020 to keep it in stage 1 (for now).
Eight years later and I am here happy and okay with having Bilateral Primary Lymphedema. My journey has been a windy, curvy path filled with countless obstacles of denial, grief, acceptance, the highs, and the lows. I had to endure the whispers of classmates behind my back, the staring, the loneliness, the questioning. The frustration not with just the pain and the fatigue, but also not being able to fit into clothing or feel normal. However, despite all that, I am now in a place where I can honestly say there is a light at the end of the tunnel. You just have to be willing to find it. Through many, many, (many) trials and errors I have made my day to day life as easy and organized as I can to manage my swelling. My discipline to take care of myself has allowed my path to straighten out a bit to continue on my journey a little bit easier than how it began.
LaShonn’s Story
Hello, my name is LaShonn Edmunds! I’m so nervous and excited all at the same time because I’m actually going to expose my medical issue to the world. Scary!! However, I hope and pray that my story will help somebody else!
I suffer from a disease called lymphedema. Some of you may ask what in the world is that! I know I asked the same thing! To my surprise, most people never heard of it …not even doctors!!! Talk about scary! In fact, I was misdiagnosed by several doctors for a couple of years because of their lack of knowledge about the disease. Of course, this is not the doctor’s fault because they only receive about one hour’s worth of lymphatic diseases training during their four years in college.
After all of the doctor’s test of heart diseases, vein issues, gout, diabetes, overweight, cancer, thyroids and they could not come up with anything. The doctor’s final prognosis was I’m overweight and I need to watch my salt intake. He prescribed me some fluid pills and sent me on way. Let’s keep in mind I was 24 just had my 3rd child and weighed about 145lbs!! So you can imagine how I felt my doctor just told me I was fat!! Even though I am a strong woman those words from my doctor cut like a knife. My thoughts were “I just had a baby a few years ago and I’ve never been a small woman. Come on… is obesity the real answer to my feet swelling! Don’t argue Shonn just Go Get K.I.M!” The doctor just gave me a life mission “lose weight to reduce the swelling”. In my mind, I’m now on a mission to get fit! Surely this will fix me and I will be healthy again.
Getting fit didn’t work out too well! New baby, work, and marriage…just too much on my plate. My swelling was there but hey I could still wear my shoes so no big deal. Until one day I was outside and got bit by a bug. I kept picking at the scar and my leg got infected! Next thing I know I passed out at work and was rushed to the hospital. Two blood transfusions and two days in the hospital later they advised that I developed cellulitis!! What in the world is that!!! EXACTLY!!! No real explanation from anyone but was told to follow-up with my doctor that it was just a bad infection.
tried to follow-up with my doctor but this particular day he did not have any appointments so they sent me to the nurse practitioner. I say she was an angel sent from heaven!!! My nurse practitioner explained to me what cellulitis was and also asked me a million questions, reviewed my charts and opened a book and said…I figured out what’s wrong with you…. you have LYMPHEDEMA!!!! I was Excited, Thrilled, Relieved!!! Yes, I got something and you know how to fix it…give me my medicine an send me on my way!!! Then the excitement quickly stopped as she pronounced my death sentence….” I’m sorry there is NO CURE!!!!!!!! ” This is where my story begins……
Tiffany’s Story
39 yrs old with Secondary lymphedema. I’ve had secondary lymphedema for 19yrs due to a injury while I was serving in the Army. My injury occurred one day while working on our military vehicles my battle and I were assigned to changing a tire on our equipment and it fell off the back of the vehicle and on my leg. Since having lymphedema I’ve had to learn that regardless of how I may look to others on the outside I’m still strong and beautiful on the outside as well as inside. I’ve overcame obstacles over the years with lymphedema mentally and physically. I’ve even had to have my hip replaced but it has never stopped my motivation to not let this disease consume me. I have 4 beautiful children and a husband who support me and admire my fight, work full time, workout daily and soon will be going back to school for culinary arts.
#ProudVeteran#lympieQueen
Danny’s Story
It My name's Danny, born 1989 in Chicago. Have lived in the Midwest area my entire life. I was born with Primary Lymphedema and began showing symptoms since birth. It all began on my right leg, with just my toes swelling up then over the coarse of my 1st years, it began spreading upward until my entire right leg was swollen. When I was 12 years old, I fell while playing one day and twisted my left ankle. From there my left leg began to swell. The difference between my legs is a huge difference. I was able to treat my left leg much quicker and been able to maintain it to much smaller size than my right leg.
Even then, the emotional impact of having lymphedema is much worse than the actual condition. I remember thinking, "Why me?" or "I wish I can be normal so I'm not so embarrassed of showing my legs".
It honestly took me until I was 25 to fully embrace my condition and not be embarrassed to show it off.
Now, I use my condition to educate others and demonstrate through example that you
Cannot let your disease dictate how you'll approach your life. And that one way to make the best of your situation is to exercise and keep up with your self-care.
That means you have to understand your limitations and know when your body needs rest. However you can still enjoy life to the fullest.
That is the main reason why I got into the business of fitness. Now I currently own a kickboxing studio and help others get into the best shape of their life no matter their condition or limitations.
Candace’s Story
It all begins witt all started when I simply had started a sit down job 4years ago( December 2018) which I never had before, and my legs would fall asleep and be soo heavy and I didn’t know what was going on. I tried to ignore it at first, because I didn’t want nothing to get in the way in my new career.
But I just couldn’t ignore my pain. I was rubbing my legs soo much and scratching I develop these wounds.
At that very moment my primary doctor was t available and I went to see family another doctor that I’m familiar with, when she saw my legs she said to me “Oh you are just containing a lot of fluid in your legs, I’ll prescribe you some water pills to take care of that”
At that moment I was already being misdiagnosed, ( My mother who works in the medical field) said immediately “My baby is in pain!!!. This is more then just a water pill quick fix” and my mom left that prescription right there at the doctor office!!!
My primary doctor was finally available and refer me to a wound clinic And thats when I was diagnosed with Secondary Lymphedema
I have never heard of “Lymphedema” I look at the doctor and said Lymph.... What?...Am I Dying?
I was scared, I didn’t know what was going to Happen Next!.....as time flown by I been to plenty of PT, Dozens of Doctor visiting, and loaded with leg equipment so I won’t be in pain.
My legs has came along way they use to weep and have an odor, and my legs would hurt soo bad I couldn’t even wear compression
But with all my mentors, family and friends supports I've over come soo much and I now can say I have Manageable Lymphedema Chocolate Legs, even though their is no cure for Lymphedema, I'm glad that I'm able to use my voice and my beginning platform to help someone who is going through the same thing I am. Who would have thought that this Southern Belle From North Carolina, could actually make a different in the Lymphedema Community
Cam’s Story
Cam Ayala 33 year old is a primary lymphedema patient, living in Houston, TX. He found Dominique on Instagram About a year ago and they formed an instantaneous friendship. Cam and Dom have very similar stories, and childhood experiences; especially with the onset of their lymphedema symptoms. Like Dom, Cam was in his early youth (11 years old) and noticed something was wrong as he was playing little league basketball. His parents took him to an orthopedic doctor to make sure everything was OK. During the initial imaging, they determined that Cam‘s right leg was about an inch and a half shorter than his left and it appeared that he may have had some cancer spotting on his right knee. To rule this out an orthopedic surgeon performed a bone biopsy on his right leg. Two weeks after that surgery, Cam‘s leg began to swell uncontrollably. After about a year of visiting dozens of specialists at the Texas Medical Center, Cam was finally diagnosed with primary lymphedema.
Desperate to prove his coaches and his doctors wrong, Cam persevered against the odds and was the first man in NCAA basketball history to play with primary lymphedema. Cam‘s health took a turn for the worse after he graduated from Texas A&M University in 2014. Cam underwent seven separate episodes of major infection in his right leg, osteomyelitis, which has resulted in 16 surgeries leading up to a total knee replacement he just had a few months ago.
Cam first became a public figure after his appearance on ABC’s “The Bachelorette” and “Bachelor in Paradise” in 2019. When the show decided to edited out his discussions and representation of Lymphedema on all of the episodes, Cam decided that he was going to use his platform to bring awareness to this lifelong condition and fight for other people who are battling this disease.
After working for a leading pneumatic compression device company in Houston for the last two and a half years, Cam has just recently began a new role as the “Director of Development” for the global nonprofit, Lymphatic Education & Research Network (LE&RN).
Cam also enjoys spreading the word on social media with Dom and their third-wheel, Phill aka: PhillyRaw as they bring to light the unique challenges of being young men with lymphedema… which inspired them to form “The Lymphie Fellas”.
Cam’s words of wisdom for anyone who is battling Lymphedema is to “It’s so important to hold firm in your Faith in God, because he will give you the strength even when you feel weak. With Lymphedema good days and bad days are inevitable. When you have those difficult moments, trusting God will give you the courage and peace to not let your Lymphedema win.”
There’s an incredible online Lymphedema Community that will take you in with open hearts and open arms. Cam can be reached via his Instagram @camronayala for any additional questions or connections 🙌🏼
Just Keep L-Y-M-P-H-I-N
Julian’s Story
It During pregnancy he was diagnosed with non-immune fetal hydrops (accumulation of fluid in different parts of his body) in the 2nd trimester. We did many tests to determine why this was happening but got no answers other than this was a very rare condition and his chances of survival were slim. Even got a 2nd opinion which was worst that the initial prognosis. All doctors could do is monitor the fluid weekly and wait to see if he made it through delivery so then they can assess the severity of his symptoms. In the 3rd trimester I also developed polyhydramnios (excess amniotic fluid) which added to the risk of complications. Julian arrived via C-section at 38 weeks, umbilical cord wrapped around his face and a team of NICU doctors waiting his arrival. Although he had some respiratory issues due to the fluid accumulation all over his body he did not require invasive procedures just a little bit of oxygen and monitoring for 2 weeks. He was able to get rid of the excess fluid on his own. We noticed months later the swelling in his lower extremities and did our “medical research”. At 9months old, the Pediatrican referred us to Boston’s Children Hospital where they did a lymphoscintigraphy and diagnosed him with congenital primary Lymphedema. The doctor told us that it was a rare and had no cure. We were told that we could put tight socks to help with the swelling and no other recommendations. We were disappointed and in disbelief in the lack of guidance/resources from them. Once again we did our own research and found a certified MLD therapist nearby who began working with Julian, taught us how to wrap his legs, gave us resources and connected us in obtaining compressions stockings/nighttime garmets/leg pump which all help to keep the swelling down and move the accumulated fluid around. Now at 9 years old there are some days Julian will say “ I wish I didn’t have Lymphedema or I wish Doctors could find a cure” and it breaks my heart each time i hear it. The worst is when he’s gotten Cellulitis infections which is painful and debilitating. My hope is that a cure is found in our lifetime but in the meantime we remind Julian of how special, strong, unique and blessed he is and how important it is to educate others on his condition and advocate for oneself.
Evelyn Gil (Julian’s mom)
Zack’s Story
Zachary (Zack) was diagnosed with Lymphedema at age 9/10. He’s been living daily with these for 3 years. Thirteen years ago he had life saving surgery at CCMC to remove a diseased Left Lobe out of his lung, called Congenital Lobar Emphysema. During his recovery he did have an issue with his Lymphatic drainage but we thought nothing more of it. Fast forward 10 years, he slips and falls in the pool and hit his back on the steps. A few days later we noticed his left leg was swelling. After thinking it was just a sprained ankle because kids are kids, off to his PCP we go. After doing bloodwork to rule out the typical things, she said to me call your surgeon at CCMC I think it’s Lymphedema. After googling what that could possibly mean, I started to look back at pictures over the past year and realized what had been happening to his left leg. (As a mom my heart sunk and ached for him, just one more hurdle my son has to jump through!). Those really cool socks up to the knees were keeping his leg in check, until the hot summer days had hit. Luckily for us he was diagnosed quickly for Lymphedema, within a weeks time and into PT. It was extremely hard to find someone to work on a child for this and someone I would trust as a mom and also that my son would like was just as important. Not only did we find someone, but she lives in our town and has over 30 years experience. He was wrapped for about 2 weeks straight of course to get the swelling down and then measured for his first custom made left knee high compression stocking right before 4th grade began too. So the dash was off to find sneakers that fit and cool socks to hide all of this. Not an easy task!
Fast forward 3 years today, Zack is now in thigh-high compression stockings on both legs and now just last week started wearing toe caps as well. He also has to wear nighttime garments to keep not only the swelling down but to move the fluid out. We are now on the task of ordering a Lymphatic pump for him to use daily at home for manual drainage. As Zack deals with the daily struggles of wearing these stockings and being a teenager is not easy either, as the kids in school are just cruel picking on him. He ignores some and tells others. I wish as a mom that if you see something like this you can be kind, it doesn’t mean they have the plaque or can catch it as one kid asked. Since really cool athletes wear something similar to this sometimes, why can’t he? As for all moms and dads reading this - the daily struggle is real and wears on us and them at times. For that I say, what does not knock us or them down will only make them even stronger in life.
We also need insurance companies to realize that this is a life long disease with NO cure for now. And when diagnosed so young ALL supplies should be covered not just some. These children need custom fit garments among other items and sometimes it is hard to find someone that will accept your insurance, so you must pay out of pocket first and wait to be reimbursed.
With this all being said, I want to personally Thank Dominique for meeting Zack in person as we live in CT. After “hang time” was over and we left for the drive home, I didn’t get the “thanks mom” I was looking for, since we are too cool for that at 13. I received a WOW mom you are right, there really is someone else like me out there. And that was all I needed and Zack as well. He felt relieved and it was great for them to exchange stories and to hear how from Dom how to help with the kids in school. It also helped me as a mom to find out some new tips on how to wrap and compress. There truly needs to be more awareness out there on Lymphedema.
-Leslie (Zachary’s Mom)
Dylan’s Story
Dylan (right) and his twin brother Devan (left) were born in 2006. Dylan had some very minor swelling at birth that the doctors assured us was nothing to worry about. By two months of age it had progressed to pitting edema in his entire lower body. Fearing that his heart was failing he was hospitalized, and for three days they ran every test they could think of, all coming back normal. As they prepared him for discharge they said, “we found this thing on the internet called lymphedema, and maybe it’s that.” Then we were sent us on our way with no other information!
I sought out a lymphedema specialist, who diagnosed him with congenital primary lymphedema and referred him to a lymphedema therapist. We learned how to wrap his legs and feet and perform Manual Lymph Drainage (MLD), and after several months he was prescribed his first set of compression garments. At this point he was seven-months-old. I thought that the hardest parts were now behind us. We knew what he had, and we knew how to treat it. But life had one more surprise in store for us - insurance would not cover his compression garments! I was outraged, and after learning that this was a widespread problem I decided to devote myself to fixing it. I couldn’t change that Dylan had lymphedema, but I could make it easier for him to live with my making sure he’d have coverage for his treatment supplies.
I first worked with my state Representative to pass a North Carolina lymphedema treatment mandate, which requires all private insurance policies based in the state to cover lymphedema compression supplies. I then began working with my federal Representative, who introduced the first Lymphedema Treatment Act legislation into Congress. Soon after I founded the Lymphedema Advocacy Group.
As of this writing, we are still working hard to get the Lymphedema Treatment Act signed into law. The House of Representatives passed the bill in the last Congress, and we are hopeful that it will make it through both chambers and become law during this Congress. Regardless, we will persist as long as it takes to ensure that this coverage gap is closed and patients have access to their vital compression garments. To learn more about the Lymphedema Advocacy Group and this legislation, and get involved in supporting the effort to improve insurance coverage, please visit LymphedemaTreatmentAct.org.
Troy’s Story
Our miracle baby. He had a bit of a rough entrance into world via an emergency c-section and a NICU stay due to respiratory issues. Once we got home we didn’t notice anything different about Troy until he was 5 months old when we noticed one foot was starting to increase in size, looking very swollen. We obviously freaked out and called our nurses hotline and got sent to our local doctor. This was the start of a long fight to get my son diagnosed. At first we got told he had a sprained ankle (we knew he didn’t). We then got told it must be an allergic reaction. The last straw for me was being told it was a fat pocket that needed surgery to remove it. We also had many paediatric doctors try to diagnose my son over the phone as no one would see him because of COVID. As a mum I did my research and found other families with children who had primary lymphedema and it looked exactly like my son, I messaged a few people and got some photos sent to me to compare. In my heart I knew that is what my son had. I decided one day to take him into the emergency department at our biggest children’s hospital in my area. As it was during covid, we were very worried but knew it was our last hope at getting diagnosed. This is what led me to get Troy diagnoses of Primary Lymphedema. We have now begun compression bandaging and getting our compression sock fitted very soon. We also have genetic testing getting done in December and are on the right track of managing his swelling and giving him to best start to life that we possibly can. It is something I really struggled when we got his diagnoses as I was sad for him and for his future as I know children can be cruel and he will have to learn about his condition and how to manage it as he gets older. Now as time goes on, it gets a little easier and I know my son will be a strong advocate for his lymphedema!
Brylan’s Story
When Brylan was born, she was declared a healthy baby. At her one month check-up, we noticed that there was puffiness on the top of her right foot. Brylan’s pediatrician didn’t know why this was occurring and as her mom, I wanted answers. So we were sent for genetic testing, but all testing came back normal. We were also sent for a combination of imaging that didn’t give us any clues as to what was causing the now progressing swelling up Brylan’s legs. After months of doctor’s appointments, imaging, testing, and exams, we felt helpless and scared. Through my own research, we landed at Boston Children’s Hospital, where Brylan was officially diagnosed with infant onset primary lymphedema at 11 months old.
Although we now had a diagnosis, we weren’t given much direction as to what was next. The specialist didn’t seem super eager to begin a treatment plan because Brylan was under a year old, but using her young age as a crutch didn’t feel right. My husband and I turned to google right after our appointment and quickly realized just how serious lymphedema is, especially if left untreated. We knew that we wanted to be proactive and as soon as we landed back in Arizona, I started my search for a CLT (certified lymphedema therapist) to help. Unfortunately many therapists were quick to say no to a pediatric patient and it took me about 6 weeks to find someone who was willing to take on Brylan’s case. Then the battle with the insurance began when trying to get her into garments. The entire process of trying to get Brylan the proper care was extremely frustrating, but we continued to fight for our daughter and learn from our experiences.
As we immersed ourselves into the lymphedema community even more, I began to learn about short stretch bandaging. Brylan’s garments were helping to maintain the swelling, but I wasn’t seeing the reduction I was hoping for. After incorporating short stretch bandaging at night, Brylan’s new treatment plan consisted of compression day and night. Of course there were tough days and nights for the whole family, but we stayed consistent and now at the age of 7, Brylan doesn’t know any different. She understands that her treatment plan is what helps to keep her as healthy as possible. She has also added other tools such as nighttime garments (great for sleepovers and when she has a babysitter) and a pneumatic pump over the past few years. Brylan is honestly thriving and we fully attribute that to implementing a treatment plan so early in her life and sticking to it.
-Brittany Williams (Brylan’s mom)
Jeffrey’s Story
Meet Jeffrey!
Jeffrey Thomas is 8 months old and such a happy, and energetic baby boy. He really is just like any other 8 month old, he’s crawling, babbling, trying new foods, and shoving everything and anything he can find & fit into his mouth. Well, there is something that makes him unique and separates him from most other babies- he was born with a rare disease called Primary Lymphedema. Primary lymphedema can affect any part of an individuals body as it occurs when the lymphatic system doesn’t develop properly or is damaged. In Jeffrey’s case it was noticed at birth, he had very swollen feet. This seemed to puzzle the doctors at the hospital and they did many tests during the 24 hour period we were there. All came back negative for any serious concern, so we were sent home with our beautiful, healthy baby boy. At 6 weeks old he was clinically diagnosed with Primary Lymphedema. We did genetic testing on his FLT4 gene, & we were told that it has a “variance of uncertain significance.” This means that we cannot conclude that this variance is what’s causing his lymphedema, it may or it may not be. The next step was genetic testing on his mom, which showed that he did inherit the gene sequence that his mom has for FLT4. Since his mom doesn’t have Lymphedema and there is no family history, we are going to continue to do genetic testing to see if we can find any other links. In the end, it won’t change our treatment plan.
We started working with Dr. Andrea Leifer, PT, DPT, CLT, WCC in August 2020 and began wrapping (bandaging) Jeffrey from his feet to right below the knee. We continued to wrap him when we could up until recently. Now that he’s on the go, he seems to be tolerating the wraps less, so we just recently had Jeffrey fitted for his very first pair of compression garments! We are so excited to start wearing compression!
We are happy to share our story in hopes that we can raise more awareness about lymphedema! Raising awareness about lymphedema is important to our family so that those who are living with the disease can get the proper diagnosis, and treatment that they deserve and need!
If I could leave you all with something else it would be to please remember that even if you have Lymphedema you can do anything you want to and this disease does not define you!
Tyla Serro
Tristan’s Story
Tristan was born May 3rd 2012 with a visible swollen arm, by the time he turned 1 it has spread to his leg and groin area. It was extremely hard to understand what was happening because after many doctor appointments they gave us almost no information since they didn’t know how to diagnose it.. Tristan’s routine consisted of customized daily/night garments, manual Lymph drainage, wrapping, exercising, food diet. Compression garments was a difficult period in our life as their cost exceed $2000. Tristan also developed Mutism & Severe Social Anxiety- he did not talk with people. He did not talk in school in Grade 1 & 2. He was crying only if someone would look at his hand- this took us years of mentoring and teaching him to love himself as he is and act normal if people ask or look at him. Tristan is now in grade 3 and is starting to talk more and be more social. He has taught us all that no matter how hard life gets to keep going and keep smiling.
Elliott’s Story
Elliott's story is quite amazing. At 20 weeks gestation, he was diagnosed with fetal hydrops (fluid in different compartments of his body). He had fluid in his abdominal, groin, and forehead. We received many tests to determine how well he was growing and if we would be able to continue with a healthy pregnancy. By 35 weeks, Elliott decided it was time to meet the world and arrived early. We were told, prior to birth, that he would have a 50-100% of non-survival due to the hydrops.
After 10 long days in the NICU, so many tests and doctors, Elliott was able to come home. The only lingering effect of his hydrops was lymphedema in his left leg. We had never heard of it before, but we were determined to not let it define him. Doctors tried to put together why Elliott has this, but nothing has given us a definite answer. It is just a part of who he is.
We have had our struggles with finding him the right kind of support as an infant with lymphedema. We have tried wrapping him, night garments, aqua therapy, and day sleeves. We have found an Occupational therapist who means the world to us and is helping him strive. Elliott does not let his leg keep him from doing anything! He is a little boy who loves life whole heartedly and we couldn't ask for anything more than that. We have our challenges as a family (finding the right shoes, learning to dye sleeves colors because kids like colors, but companies think nude is best, getting night garments on when he's tired and it's humid) but this is our life and we just keep moving forward. We will continue to learn, grow, and educate ourselves and the world around us about lymphedema.