By Guest Blogger, Pernille Henriksen, International Patient Advocate
Over the last years, working as a patient advocate, I continuously see how patients with lymphedema are in doubt about what kind of physical activity they can do. Not only are patients worried about if the activity will increase their swelling but also if it will make their lymphedema worse in the long run. And of course, there is the continuous question about wearing or not wearing compression while exercising.
One thing is clear though….and that is that no patient or their lymphedema is the same and neither is the solution. Some patients with lower limb lymphedema can run a marathon while others can barely run 5 km without increased swelling. Some secondary upper limb patients can easily do yoga with planks and downward dog poses, while others feel the strain in days afterwards.
Clinicians – even experts in lymphedema – often fall short in being able to recommend or guide patients in what best to do. Repeatedly patients are being told not to exert too much pressure or strain on their lymphatic limb. And since this is such an objective measure newly diagnosed patients often choose to stop all together for fear of aggravating their lymphedema. The fear is real – but while physical activity is not only a vital element to our overall physical and mental health it is also vital to #movethatlymph.
For World Lymphedema Day 2021, the webinar “Sport and Lymphedema – What Is Possible?”, organised by CMID, an Italian referral center for primary lymphedema, and the patient association Lymphido Onlus (see further down) covered these fears and answered some essential questions.
Professor Roccatello, director of SCU and CMID (Nephrology and Dialysis, and Interregional Coordination Center for Rare Diseases of Piedmont and Valle d’Aosta, respectively) of the hospital San Giovanni Bosco in Turin, introduced the webinar and the current situation of patients with lymphedema in the region of Piedmont, Italy. He presented their diagnostic and treatment pathway which is the consensus document of the Piedmont region announcing that from 2021 genetic testing will be part of the diagnosis of patients with primary lymphedema.
Dr. Giancarlo Rando, physiatrist, and director of the lymphedema center at the hospital “Michele e Pietro Ferrero” di Verduno and specialized in sports medicine explained how “patients often stop physical activities when they get lymphedema as there is little information and research into this”. However, he continues, “physical activity decreases risk of many diseases and is a major contributor to lifestyle diseases that can lead to death.” His main messages were that everything is possible BUT one must know and understand one’s own limitations. You need to monitor your progress, use your compression when exercising and preferably have a personalised program.
Strenuous physical activity, such as dragon boating, are often contraindicated – explained Elodie Stasi from CMID, a physiotherapist working with lymphedema patients for more than 25 years. However, the outcome of the project “Abreast in a boat”, initially commenced in Canada in 1996 with breast cancer survivors and monitored by the physician Dr. Mckenzie, was very clear. No new cases of lymphedema were found and no aggravation for those who already had lymphedema.
There are several studies available on dragon boating with breast cancer survivors and lymphedema patients. Case reports by Harris et al. 2000 showed no difference in measurements after 8 months of training and after a race.
Furthermore, the decrease in BMI (Body Mass Index) has in turn a positive impact on lymphedema management. But the psychosocial aspect of team sports is equally important for those who are cancer survivors and lymphedema patients.
However, it is important that when you start a more intense sport to prepare yourself and be guided by a competent clinician trained in physical activity/sports medicine.
Patient Testimonials – Dragonette Torino Onlus and Associazione Dragonesse Avigliana
Herta, a patient and dragoness testified “three years after cancer treatment I got lymphedema and I protected my arm as it was made of glass. After 10 years I met other patients and joined the dragon boat team. I immediately saw an improvement. I always wear my sleeve, also when I do dragon boating. I have it changed regularly, and it is an essential part of my life and the treatment of my lymphedema. I attend physiotherapy sessions, I get manual lymphatic drainage and, if needed, bandaging, but I have kept the same measurements since I started this activity.”
Isabella Guistino who is the physiotherapist of the team explained that, during the strict Covid pandemic lockdown in Italy, many lymphedema patients of the team experienced a worsening of their swelling. In the summer period in which there were less restrictions, they had 14 training sessions and they did pre- and post- measurements, recording improvements in the edema.
Part of the training consists also in warming up to reduce risk of injury.
Paola Zaccagni, captain for the team “Dragonesse Avigliana” and breast cancer survivor, explained “not all women who have cancer treatment used to be sporty. But they have become so by joining the team of “dragonesses”. This is a sport of solidarity – for all, no matter the physical capabilities. One must come, to see, to try.”
We experienced a very touching moment when Michela, another team member and secondary lymphedema patient, gave her testimony from the intensive care unit of a hospital in Turin, where she was being treated for Covid-19. She explained that thanks to the regular aerobic exercise of dragon boating, it has helped improve not only her physical shape but also her lung health thus responding well to the treatments.
For more information on dragon boating for women after cancer treatment check Home | International Breast Cancer Paddling Committee to find a local team or even start your own!
Dr. Giuseppe Parodi, who works at the Institute of Sports in Turin, emphasized that physical activity needs to be done on a regular basis. Three important factors are the type of activity, the intensity and regularity. He explained how important physical activity is in the prevention and treatment of chronic diseases. In fact, he believes it should be prescribed – suitably adapted to those with a chronic disease. Physical activity not only has a positive effect on the venous return, the metabolism, the muscles, the lymphatic system but also on one’s mental health.
Dr. Marco Pozzato, from the hospital San Giovanni Bosco in Turin, introduced “Fit Walking” (also called Power Walking) and explained how physical activity can reduce risk of many different conditions such as hypertension, diabetes, and cardiovascular diseases. And why “Fit Walking”? Because a person normally walks at a speed of 3-4 km/hour. With brisk walking the range reaches 4-6 km/hour and with fast walking the range is 6-8km/hour.
There are three categories of “Fit Walking” – 1. As a lifestyle (for those who already like to go for walks but want to improve their posture and walking style), 2. Performer style (to improve the physical capabilities looking for muscle tone and potentially weight loss) and 3. Sport style (for those who are competitively training and for races, and who are looking for a performance sport).
Nonetheless, it is a low impact style of exercising. There is however a technique to learn as it also involves the arms and upper body. It is not too different to Nordic Walking, which also use sticks. But it is important to allow patients to have an induction period to learn the correct technique. Patients, with kidney problems and other related diseases, monitored by Dr. Pozzato saw a significant improvement in their systolic, and diastolic pressure. As expected, their BMI also improved.
He also believed that physical activity should be proposed to patients exactly in the same way that pharmaceutical therapies.
It was announced that, as soon as restrictions related to Covid-19 are lifted, a Fitwalking project, guided and monitored, would be proposed to patients with lower limb lymphedema as well as those with lipedema.
Patient Testimonial with Elena Matta, primary patient with left leg lymphedema, Italian ePAG (European Patient Advocate of Pediatric and Primary Lymphedema in VASCERN) and board member of Lymphido Onlus.
Elena explained that since she was a small child her parents always encouraged her to do lots of sport, to try many different things and participate in both team sports as well as individual ones. But she particularly fell in love with skiing, practicing it as performance sport till the age of 19.
Elena lives in the north of Italy where there are many amazing opportunities to ski. Between 2005 and 2006, she was doing the FORMONT course to become ski instructor, and one day after a whole day of skiing her knee was swollen. She continued nonetheless with the training the next day, but after a few days the whole left leg was unusually swollen. As she returned to the city, she went to a myriad of doctors, did a long list of different tests to rule out a thrombosis, broken bones, torn ligaments, cancer … until 6 months later she was diagnosed with primary lymphedema. Despite newly diagnosed with lymphedema she pursued her studies in engineering and passed the exams to become a ski instructor.
With a heavy heart she reduced her sports activities because she was told to. But after a while, she realised she could not give it up. Sport was part of her, her upbringing, her personality. So, she started to swim, to run, to do workouts, and she felt better again, and her leg was fine. She even did desert hiking and became a scuba diver while working in Egypt. And when she was back in Italy, she hit the slopes again.
She always wears compression stockings but alternate among new and older ones to suit the physical activity she does. She has learned after trial and error what works well for her leg. She says, “sometimes it might be that you can go without compression while exercising but then immediately afterwards you can apply a snug bandage”. Her key message is that you must try different things, with prudence and awareness of your own body – and not to give up the things you love, like your passion for sport just because you have lymphedema. In fact, in her case, sport is a real successful therapy to keep her lymphedema under control.
Patient Testimonial – Rossella, secondary patient with lymphedema in both legs.
In 2018 Rossella went through cancer treatment (lymph nodes were taken from the abdomen). She was informed by her oncologists that, being a sportswoman, she would have less probability of developing lymphedema and, therefore, she was not really paying much attention to the risk. After 1 year, she developed lymphedema in both legs and now also genitals and lower abdomen. She could not believe it…. first cancer and then lymphedema.
Her passion was running but her oncologist told her she must stop running and swim instead. Rossella decided to learn everything about lymphedema as she was determined not to give up running. It was her true passion. She met with doctors, therapists, physiotherapists to educate herself on this condition and its limitations. She finally found a doctor that supported her in her desire to continue running.
She refocused, joined a running club, and started to prepare for a 30 km race. Even with the discomfort of wearing compression and the pain, she continues. Sometimes she wants to remove her compression to eliminate the discomfort or avoid people looking at her, but “I put on my compression stockings and bermudas. It might be difficult, but it is not impossible” she says. And this is also not giving up for something she loves, and it is part of her.
Rossella continues: “I live with my lymphedema and I listen to my body. We are all different, but we should not give up our passion. My tattoo reminds me of this”.
Patient Testimonial – Maurizio, primary patient with lymphedema in both legs. Has a son with primary lymphedema. Board member of Lymphido Onlus.
Maurizio and his parents were told that he should not be doing any team sports while growing up. So, soccer (European football) was out. He remembers watching, from his balcony, his friends play on the field wishing he could join. There was little to no information about lymphedema, nor social media, when he grew up and so his parents would travel all over Italy to find doctors who could help.
Luckily, when Maurizio’s son, Matteo, was born, they moved to the region of Piedmont where he found clinicians knowledgeable about primary lymphedema. They helped with providing information and support. He says, “we learned about the different treatment options and techniques to manage lymphedema including physical activity”. Matteo is not keen on individual sport, but prefer those practiced in teams, as he is an active and energetic boy. So, even when he chose Rugby, a quite risky sport, we still let him try. I always felt like the fish in the bowl looking at others, I did not want my son to have that experience”.
They tried rugby and it was a success, in part also due to the rugby team and the clinicians treating him. “He is now growing up as a normal boy” Maurizio says and continues “I support this, I recommend it for the integrity of the person, for the mental health”. Furthermore, since he started practicing rugby Matteo experienced a regression in the lymphedema of the hand.
Maurizio and his family have been joining the children’s camps and he believes it is extremely important not only to learn how to manage your lymphedema, but also to feel part of a community, to see other children in the same situation and to learn how to overcome the daily battles.
We finished with a presentation about the children’s camps where patients and their family learn about the benefits of not only being allowed to join sports activities but how important it is for the lymphedema. In the yearly camps, organised by CMID and Lymphido Onlus with the support of the French and Italian frameworks in the International Lymphoedema Framework, different physical activities are tried out such as Fitwalking (2019) and Aqua Lymphatics (2020). Therapists and experts in sports medicine make a dedicated effort to discuss with parents the possibilities of the different activities on their child’s lymphedema. The key message was that children should not be held back to enjoy not only the physical but also the social benefits of sport both during and after school.
If you were inspired to read these patient testimonials, then join us in the Lymphie Strong Running & Fitness Club for Lymphedema to find even more ways to #movethatlymph. I also encourage you to check the calendar of #movethatlymph challenges here to get started on an exercise regime or just to try something new. There is something for all levels.
About Me
I have primary lymphedema in left leg which started at the age of 17. It took 3 years with intermittent and unexplainable swelling before I was diagnosed. After many years of neglect, denial and lack of managing my lymphedema I finally embraced it and started taking care of it. One of my great successes was to start swimming and you can read my tips in this blog. I am now a patient advocate working on empowering other patients to manage their lymphedema in the best way possible and raise awareness of the condition.
About Lymphido ONLUS
The patient association was created in 2016 by the parents of the children from the camp. They came together via CMID as they or their children are patients there. Though this is a young and small association they are very dynamic and determined to disseminate and share useful information among the members, protect the needs and interests of the members, and raise awareness among the health care institutions and the managing bodies of the regional and national health care services. For more information or donations visit the website http://www.lymphido.it
About CMID
The SCU Nephrology and Dialysis and the Interregional Coordination Center for Rare Diseases – San Giovanni Bosco Hospital (Turin) – has been supporting patients with primary lymphedema for 13 years. It is the first center in Italy to have provided a regional exemption for patients with lymphedema on the basis of the patient pathway (in Italian PDTA: Diagnostic Therapeutic Assistance Pathways). To date, it is the center in Italy reporting the highest number of patients seen with primary lymphedema to the National Institute of Health. Every year, in collaboration with the patient association Lymphido Onlus and the International Lymphoedema Framework (ILF), it organizes a therapeutic education summer camp for children and teenagers with lymphedema. Since 2018, CMID also offers the university master course (I level) in Practical Lymphology for physiotherapists and nurses.
Learning more and connecting with others can be a source of support and comfort.
Visit our lymphedema groups to find what’s right for you.