As patients, we’re not always privy to what’s going on in the world of lymphatic research. The information’s out there, but it’s not always super accessible to most of us—if you don’t know where to look or aren’t able to translate the medical jargon, it’s easy to miss out on some pretty big stuff.
In addition to that perceived barrier, it’s common for lymphedema patients to feel somewhat neglected by the medical community: many of us have experienced misdiagnoses or a lack of access to treatment due to the paucity of lymphedema awareness among medical professionals; many cancer patients aren’t even warned of lymphedema as a side effect of their cancer treatments. Bereft of any answers or explanations, we’re left in the dark, feeling along the wall for a light switch.
I’ve felt that way myself, having gone without a diagnosis (and therefore without treatment) for fourteen years despite being seen by numerous doctors and specialists throughout my childhood. Even now, with such a wonderful team of certified professionals at my lymphedema clinic, I oftentimes feel like the mainstream medical community doesn’t think much about us lymphies. I know there’s research going on, but I get impatient: when are we getting a magic pill? When will we have a cure? For something that’s so widespread and common, why don’t we hear more about lymphedema in the mainstream?
Last week, my assumptions about lymphatic research were completely turned upside down—in the best way possible! Through sponsorship by the lovely people at the Seattle-based company North American Rehab, a national supplier of lymphedema products with a focus on customer care, I was able to attend the National Lymphedema Network 12th International Conference in Dallas, Texas.
For three days, I was immersed in the world of lymphedema and lymphatic research. Stationed at North American Rehab’s booth in the exhibitor hall, I got to meet lymphedema therapists, nurses, doctors, researchers, manufacturers of garments and treatment supplies… it was like a “Who’s Who” of the lymphedema and lymphatic research communities! At one point I was walking down a hallway and saw Dr. Stanley Rockson (!) speaking with someone just a few feet away from me, and I felt like I had spotted a celebrity.
Being at the conference was like taking a peek behind a curtain and seeing all the bustling activity that is the lymphatic research community. Just being in proximity to all those brilliant minds and passionate medical professionals was invigorating; I was reaffirmed that there are tons of people—smart, talented, compassionate people—in our corner, working hard to better understand and treat our lymphedema.
Although I wasn’t able to attend any of the lectures or symposiums, I did get to try some cool treatment devices, like the PhysioTouch (also known as LymphaTouch). This device uses negative pressure to stretch the skin and the tissue underneath, dilating the endothelial openings of lymph vessels and improving the flow of lymph. (Think manual lymph drainage or using a pneumatic compression pump, but much more focused and controlled.) It was such a fascinating experience to try out the device, and I can see why so many lymphies love using it as part of their treatment!
Another cool device I got to try was an instrument developed by the Delfin company in Finland. This instrument, called the Moisture Meter D Compact, measures interstitial fluid and edema in biological tissues.
We used the Moisture Meter before and after my PhysioTouch treatment and compared the measurements—it was a neat little informal study that quantified how the PhysioTouch broke up my fibrotic tissue. It was also really insightful to see where exactly I have the most fibrosis in my affected limb, something I’ve never had measured before. Now I know where I need to focus my manual lymph drainage massages in order to really work on breaking up that deep, hardened tissue.
I had such a great time at the conference—it was truly a whirlwind couple of days! I met so many fabulous people, including some I’ve previously “met” online as well as Lymphie Life readers from around the world. It was almost like being in a refreshing yet bizarre parallel universe, where speaking openly about lymphedema was the norm instead of hiding it. I felt comfortable, and it was nice to be able to share my experiences as a woman with lymphedema with people who genuinely sought to understand.
Being there was inspirational and exhilarating, and it was incredibly validating to see just how much is going on in the world of lymphatic research. I’ve never felt so empowered as a lymphedema patient as I did there, surrounded by such passion, innovation, and—most of all—hope.
There is so, so much happening in lymphatic research right now; just because we may not be hearing about it all the time doesn’t mean it’s not going on! In fact, lymphatic research has been exponentially increasing since 1990, which is profoundly encouraging as we continue moving forward.
If you’re interested in learning more about the lymphatic system and the current state of lymphatic research, check out this awesome talk by Echoe Bouta, Ph.D., courtesy of the Lymphatic Education and Research Network online symposium series. It’s a little heavy on medical jargon and concepts, which can be intimidated to those of us (myself included!) that aren’t familiar, but I still recommend giving it a watch—you’ll learn a lot!
I want to give a big THANK YOU to the folks at North American Rehab for making it possible for me to attend such a life-changing event!
Hey! Thank you for your positive blog post.
I can imagine when I had my first signs at the age of 19 my family doctor said: it is venous edema, nothing you can do about it. (my mother and grandmother where told the same). Three years later I had a specialist saying it was lymphedema and luckily she referred me to physiotherapist and other compression therapy. It was the start of the internet ;) and nothing there to find.
When my condition worsened I had a doctor saying: conservative therapy is all you can do and not in your lifetime there will be something else available. (I was 27 at the time and it felt horrible, especially the ‘100 procent sure it will worsen, how bad and in what time period we can not predict’ phrase that came afterword – with : ‘pregnancy will make it worse and you can pass it to your kids’, was one of the most horrible 5 minutes conversations I had in my life.
There I was on the street with very heavy words in my minds and a very troubled and insecure future a head of me.
Three years later they are offering lymphatic surgeries in lots of hospitals and there is almost an overload of information on the internet….
And with all these clinical trials going on I am very optimistic that that doctor might have to rephrase his words from 4 years ago.
With all this going on – and it is just starting!- it makes my le less a burden, less a struggle and it keeps me suddenly very motivated to keep discipline in my treatment because it might not be forever!
Hope alone is like a small pill making a daily struggle less heavy and thank you for sharing stories like this!
I appreciate you sharing your story — I think it’s so relatable, as so many of us receive devestating prognoses from doctors who, quite frankly, are not well-versed on lymphedema or lymphatics in general. It’s dangerous for patients to get that kind of incorrect information because I think it plants the seed of complacency: “Why bother taking care of my leg if it’s just going to get worse anyway?”
I’m so glad to hear your renewed sense of confidence and optimism regarding your lymphedema!! And you’re right — all this new research, all these new treatments, are only just beginning. I think we’re at the cusp of some big changes in the way the lymphatic system is understood, and thus how lymphedema and other lymphatic diseases are treated. We must always, always have hope, because we’ve got a lot of brilliant and passionate minds in our corner working hard so we can have improved prognoses and a better quality of life. :)
Thank you for sharing your story and your insight!
Yes, totally true about ‘devastating prognoses’. I remember I spend almost one year visiting doctors on my own, hoping for better news, and then again: bam, another rude answer. And again me walking out off the cabinet, crying, ‘why me’, and nurses looking at me : ‘poor girl’ .
With the rise of internet, information, etc I am much more confident like you say. And I ask questions and those rude answers just give me the look: ‘honestly, you should update! ‘. :) :)
Or when they say: ‘I never heard of a story like this before, are you sure you did not catch a parasite on you holiday in the tropics?’ Then I am like: ‘Euh the fact that you never heard about primary lymphedema is really your lack of information, not mine!’
And then I walk out and they look at me: ‘What a difficult patient’ haha.
But I don’t care. :p I have the right not to accept ‘there is nothing to do about it’ !
Finger’s crossed for the future!
I could not think of a better representative than you to represent the patients at large! So glad you were able to attend and learn some new tricks :)
Aw, thank you Meredith!! <3
It means so much to hear that from you, as you've been with me and this blog since day one! It was an incredible experience to attend.
Thank you so much for this information. I commend you for attending the conferences! As a PhD Biochemist with primary lymphedema in both legs (19 years) this research absolutely amazes and inspires me! If there is an opportunity for other scientists or the general public to attend in the future PLEASE let me know! Even with my scientific background, I did not realize how much research was happening in the field and on our behalf! This makes me so happy. Your blog has been completing inspiring! Thanks for giving a voice to so many of us who have suffered in silence.
Wow — you’ve got a unique perspective as both a person living with lymphedema and as a PhD Biochemist! That’s so cool. I will definitely keep you posted on upcoming events, as I’m hoping to attend more of them, too. As I said in a reply to another comment, I really think we’re on the cusp of change in lymphatic research. The implications for treatment are incredible. As a patient, I’ve always felt hopeful for more treatment options (and maybe a cure), but in the wake of all that’s going on, that hope has shifted into confidence. What a cool feeling to be able to say that!
I’m glad you enjoy the blog and hope to see you around the comments section more often! :)
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Hi, In india, i can’t found any device ( PhysioTouch,….) in physiotherapy center that u specified in your blog. Is it possible to cure or return back leg in original condition.
Can you specified why it’s happened with only one leg (no cancer and nothing other disease). what causes to i suffer from this. it’s only in one leg only.
I’m not a medical professional so I cannot comment on your condition with certainty, but it’s possible you may have primary lymphedema. You can read more about primary lymphedema here: https://thelymphielife.com/2017/03/04/a-primer-on-primary-lymphedema/
There is no real cure yet for lymphedema, but it can be managed through various treatments and, in more severe cases, with surgical interventions. Generally, lymphedema is managed best through complete decongestive therapy (CDT), which is a combination of different treatments: bandaging, compression garments, manual lymphatic drainage, exercise, and self care. Unfortunately, much of the burden of lymphedema treatment falls on the patient, but it’s possible to reduce swelling if you’re consistent with your treatment routine!
I’m not sure what’s available in India as far as lymphedema treatment; I would suggest contacting the India Chapter of the Lymphatic Education & Research Network at IndiaChapter@LymphaticNetwork.org to see what resources are available near you. It’s important to start seeing a medical professional trained in lymphedema soon, so you can receive a proper diagnosis and determine what your treatment options are!
Hope that helps! Wishing you the best of luck.