about me

alexa-ercolano2016Hello, lymphies! My name is Alexa, and I have primary lymphedema in my right leg.

In 2011, I created this blog as a means to cope with my diagnosis; now, it’s evolved into a means to educate, connect, and support lymphedema patients and advocates across the globe. It’s also a means of spreading awareness of lymphedema to those who maybe aren’t so aware, with the hope that one day no one will go without treatment or care simply due to lack of awareness.

My Lymphedema Story

I’ve had symptoms of lymphedema since I was an infant, and although my parents took me to a number of doctors and specialists, no one knew why my leg was swollen or what to do about it. This lack of information and awareness turned into almost fifteen years of my living with untreated, undiagnosed lymphedema.

Before my diagnosis (and even for a few years after), I used to think my lymphedema was secondary: I had corrective casts on my legs when I was an infant, so I assumed one had been applied too tightly, thus damaging the lymphatic system in my right leg.

Today, my lymphedema therapist believes my lymphedema may actually be primary. Because I went so long without a diagnosis, however, we just don’t know for sure how I developed my lymphedema or whether it’s primary or secondary. The ambiguity and lack of answers are, unfortunately, a frustrating and common reality for many of us living with lymphedema.

But I believe we can change that, together.


A quick note: Although I’m pretty knowledgeable about the feelings that come along with having this disease, I’m by no means an expert on lymphedema—I’m not a doctor! I can only speak from my own experience. If you are seeking medical advice, please consult your doctor or lymphedema therapist pronto!

The Lymphie Life® is a registered trademark of Alexa Ercolano, and “Stay elevated”™ is a pending trademark of Alexa Ercolano. All rights reserved.

20 comments on “about me

  1. Allyson Hannah

    Hi!
    I’m 16 and I’ve also had lymphedema since I was an infant. I was born with it in my left leg. I’m really happy to find you. I understand everything you said about how little things like finding shows turn into a big issue. I always hate when dances come around and I never go because I feel too exposed in a dress with my leg showing. I can’t talk to anyone about it. I also hate how I’m always having to explain it to people, or if I ever find a guy I really like before we go anywhere with our relationship I have to tell him about this condition that no one has even ever heard of. It’s lonely. But I’m working through it. Thats way cool that you made a blog about it. Well talk to you later :)

    • Hey, Allyson!
      I’m so glad you found the blog, and I hope you comment on it often :) I hate how lonesome and isolated this condition makes us feel, which is why I made the blog – so those of us with it can feel less lonely, and realize that there are so many of us out there and we just don’t know it!
      I’m sorry you have this condition, but hopefully we can all help each other feel a little less alone and a lot more positive about ourselves, now that we’ve found each other!
      Be well <3

  2. Amy_God's Chosen

    Hello to all who have come across this blog and suffer from lymphedema. Alexa I must say I am grateful to you for starting this and I am especially grateful to have found it. I got lymphedema when I was a sophomore in high school but was never officially diagnosed with it until I was a freshman in college. Part of what makes this so frustrating for me is that I don’t know what caused mine. I woke up one morning and BAM permanent swelling for the rest of my life. I have not had injuries or radiation from any kind of cancer so the questions still linger for me as to why and how. I can relate to the feelings of loneliness and the frustration of trying to explain to people who have never heard. I am not comfortable wearing shorts or dresses in public and it breaks my heart that I am limited because of this insecurity. I hope that one day awareness is made and we can continue this fight. and to the ones who have already expressed concerns here on this blog remember we are no longer alone! :) I hope others venture their way here and we can continue to encourage one another! Thanks for it all!

  3. Amy, what kind words! Thank you so much, and I’m glad you found the site :)

    I’m sorry that you have to deal with lymphedema – it’s something that no one should have to suffer with. The hyper-awareness it brings to ourselves and our body image is sometimes unbearable and oftentimes exhausting, especially when you feel like you’re going through it alone. However, I DO believe it makes us that much stronger. We live in a world where there is hardly any awareness of our disease – even in some medical communities! – and we have to keep fighting for ourselves and our health because there aren’t many people out there who are fighting for us.

    Be well, and come back often! <3

  4. Jim Hughson

    Hi Alexa. Nice to find your website and blog. I’m a new lymphie at 67. The lymph nodes in my right groin were removed because they were swollen and then were found to be cancerous. (I learned a new phrase: ‘excise biopsy,’ where the organ is removed first, and then the reason is determined afterwards.) So now I have lymphedema in my right leg. I was getting pretty bummed because simple management seemed to be a loosing game as the lymphedema is spreading. So I finally decided to take some action: first research, especially about nutrition. Now I am going to look into acupuncture and/or Ayurvedic medicine. Acupuncture and Chinese herbs did what Western medicine could not several years ago when I had chronic fatigue. BTW, Ayurveda is the (eastern) Indian ancient form of medicine and diet is a major part of it. I will let you know if there are any significant developments.

  5. Hello Alexa, my name is melanie, I am a 33 canadian women with primary limphedema in both of my legs. It is so refreshing to find someone like you who talks about lymphedema. We have all a story to tell and I feel that with you, here on your blog, we are not alone :) thank you for sharing all your moments with us!!!

  6. Found this like via Facebook and already don’t feel quite so alone. I am 42 and the end of last year, I was diagnosed with Lymphedema. I guess I am pretty blessed since it appear that It has been caught early as really the only signs were painless swollen ankles and constant painful feet on walking long distances and my legs looking pretty much like they had been punched constantly. Doctor said it was just bad circulation and it was only at my insistance on being looked at by the right people; that he told me the bad news. I am afraid that I broke down into tears as I saw my sexuality disappear! Thankfully, (I live in France), they make super sexy compression stockings and lol even my sister – who expected really horrible brown/biege colour, was astounded with how fantastic they look. My big issue really is the heat and I am afraid I am naughty in that I don’t wear them when too hot, but find I have to raise my feet and actually see the swelling around my ankles calm down, so really I am one of the lucky ones in that my legs look normal and can wear dresses and skirts still, but I do confess to suffering from vanity and am ashamed of the colour of my legs!!

    • I’m really glad you found the site, Suzanne! You’re never alone, despite it seeming that way. Lymphedema can be such a lonely disease – it makes you isolate away from others, and you rarely meet other people who have it. But you have now, hooray!

      It sounds like you’ve got a healthy outlook towards your legs (and your sexy compression stockings probably help that, too)! I hope you keep that up, because that’s almost as important as wearing your garments :)

  7. erma vance

    Hello! Alexa,

    Thank you! for starting this blog. I’m a 55yr. old African-American woman with lymphedema. I’ve had it ever since I was nine years old. It runs on my mom side of the family, she has it, her mother had it and so did my aunt. I had the dye test when I was young to find out why the swelling in my foot didn’t go down when I sprained it playing at school. It’s so nice to find others who are have lymphedema and all the information on the internet to help us with this.

    We can share all our information and finding about this disease. I find now since I’ve gained so much weight and the foods I eat make me feel sluggish. I want start a better diet especially lighter food and I will invest in that “Nutribullet” to make healthy fruit & veggie drinks. Also I join “CURVES” to helped with my circulation and health.

    • Hi, Erma!

      I’m so glad you found the Lymphie Life. It sounds like you’re being very proactive in taking care of yourself by watching your health and weight – that’s wonderful! I wish you all the best and you’re welcome to keep us posted on how things are working out for you!

      Alexa

  8. I enjoy you because of your whole work on this blog. Gloria delights in doing investigation and it is easy to see why. Many of us hear all concerning the compelling way you offer practical guides through your blog and even welcome response from other people about this area then our own girl is becoming educated a great deal. Take pleasure in the rest of the year. You are always carrying out a useful job.

  9. I am so happy to find your blog. I, too, have lymphedema in my right leg. Mine was caused when my knee hit the dashboard in an auto accident. I have been searching for alternatives to the heavy, bulky, hot, and flat out boring compression garments they keep putting me in. So if you find anything, let me know!

  10. Theresa Ferguson

    I am a breast cancer surviver and have lymphemdema. It is so hard to find thing about it or people who even know about it. I have learned most of what I know by looking it up on the web. I wear a sleeve every night to bed in call it my oven mitt. Thanks for being here.

  11. Howdy just wanted to give you a brief heads up and let
    you know a few of the pictures aren’t loading correctly.

    I’m not sure why but I think its a linking issue.
    I’ve tried it in two different internet browsers and both show the same
    outcome.

  12. I had a uterine cancer removed last year, and as part of that procedure, my entire right side groin lymph nodes were taken (they did not need to be! – but nobody cared to do enough research/exams/cure, and that’s what saddens me, i.e. surgeries prevail in the US over cure). So, as the result of that and a severe flu this year, I got a right side (groin- leg) lymphedema. It is not as noticeable for others, but for me is a great deal!

    Therefore, I am so happy finding you, sisters in suffering through this problem, and keeping positive. I am especially content to meet here people from different countries. I am originally from Ukraine (Donetsk, in fact!) and have been living in the US for the past 20 years now…..

    I love all of you, my lymphie- new sisters, and wish you the best of improvement in your condition!

    Tamara

  13. I’m a 58 yr old mom of 4 who was just diagnosed with primary lymph…just left foot and ankle. It’s been 1 year since I went through massage tx and learned to wrap and wear compression stockings. The harder thing is that my youngest child – 17 yr old Maria – was just diagnosed with the same thing. For her it’s both feet and ankles (even calves)…she hasn’t started Lymphatic massage yet (there’s only 1 OT in our area who does it and a looooong waiting list), but I feel very sad for her. No more skinny jeans, no more long jeans in general and she’s not a skirt/dress girl…she’s quiet and embarrassed about how big her feet are. Does anyone have advice on teen clothing and shoes? She will be working this summer in a clothing shop…what can she wear that will cover her legs up?
    Me – I am past all that and have no issues with the stockings…except that I would like to paint the stockings but have no idea if the material will take fabric paint. Has anyone tried it?
    Thank you for your help!!
    Sher

  14. Jennifer A

    Hi there. Lived your coverage of Isa-bella! My daughter has Parkes Weber Syndrome as well, but we are unaware of any lymphedema aspects (as of yet?). Just starting this journey & have reached out to Isa-Bella as well.
    Take Care.

  15. Hi,
    I was diagnosed with Lympedrma last year. About 3 yrs ago I noticed my ankle was swollen and it lasted about 2 weeks. It would come and go and I was told that maybe it was the heat but after a few Dr visits I was finally referred to a specialist that diagnosed me with Lymphedma. I had cancer at 21 and had a hysterectomy, That was 21 yrs ago and here are the results of that now. I cried in the car after I was diagnosed because I felt like, why me???? I have to wrap my leg every night and in the mornings the swelling goes down significantly or is gone but it starts to swell during the day, especially if I have shoes with straps or even ankle socks will make it worse. No one really notices unless I point it out but sometimes I feel like EVERYONE is just focusing on my leg and it makes me feel very self conscious. I’ve tried taking vitamins but they make me feel sick, I got tired of juicing and now I soley rely on the wraps.
    Thanks for starting the blog, finally people that could relate to what I’m going through.

  16. Susan Embrey

    Hello, my name is Susan. I am 62 years old. When I was 25, I developed a myoleiosarcoma in my right leg. I underwent cobalt radiation at the City of Hope for six weeks. It left a severe burn under my right butt cheek but, otherwise, no ill effects. When I was 32, I began to develop some swelling around my right knee and ankle but, elevating my leg over above my heart would bring relief. No problems, really until I turned 48. I was always very active, skiing, scuba, golf…and on a hike, without proper shoes(!), I cut my heel on my right foot. I developed a severe case of cellulitis that put me in intensive care. My leg swelled and never really decreased much in size after this. This was the first time I heard the word lymphedema. Learning leg wrapping, getting fittings for heavy duty compression stockings and learning how to massage and exercise my leg was, truthfully, depressing. I was a high school biology teacher. I remember starting the school year, that year, (2001) with my leg all wrapped up like a huge tree trunk. But, teaching biology, I was able to turn it into a ‘teachable moment. As time went on, it felt like the muscle in my foot was shrinking. It didn’t seem to sit flat on the floor any more and I developed a small limp. Pins and needles were also aggravating. Between 2001 and 2005, I had cellulitis 4 times, once from a blister on my foot, once from a cat scratch on my leg, once from scratching a mosquito bite and, I forget what else. Over time, I began to lose balance and fall more frequently. In 2007, I slipped and broke my femur in my right leg. I had a titanium rod put in place. As a result of the radiation, the bone had osteoporosis, the nerves (fried) and muscle had atrophied and my lymphedema was more severe. In 2011, the rod in my leg became infected. It was difficult, for who knows what reason, to diagnose. After a painful year of not walking, UCLA finally diagnosed it but, by then, I needed a total hip replacement. I was very worried but, it all worked out fine. It may seem from reading the history of my journey with cancer, lymphedema, etc., that it’s been a not so happy life. But, that’s not true. I have always been most grateful that I still have my leg, that I can still walk on my own two feet and I’ll be darned if it’s going to keep me from doing what I want to do. I have a great husband, of 35 years, who is probably the main reason for that. So, I think having someone who understands you, supports you, encourages you and, is willing to listen when you’re frustrated, is a great asset. I put on my compression stocking every day, before I get out of bed. I wear it all day. I have a compression pump I use for an hour every evening. I take walks twice a day and do chair yoga 3 times a week. I used to swim 3 times a week but, stopped when I got that infection. It did help and I do plan on getting back into it. My leg does tire easily, I can’t clean my whole house in one day, anymore. And, standing in once place for more than 15 minutes is, literally, a pain. But, I guess my biggest gripe is not being able to wear shorts, skirts, leggings, etc. I could, I guess, but I won’t. My pants just don’t fit correctly, wide legs are the norm, now. But, the older you get, the more you realise almost everyone you know has something to complain about. The idea is to keep moving forward, keep putting yourself out there and try to find joy every where you can. Keep moving.

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