Lymphedema Awareness Month: Did you know it affects 250 million people?

Lymphedema Awareness

March is celebrated as the Lymphedema Awareness Month and if you are wondering what is Lymphedema, that is precisely why we need to dedicate this month to spreading awareness about this disease. Although it affects millions of people worldwide and there is no cure for this disease, the awareness levels are low even among the medical fraternity. The FTEM team had an opportunity to speak with Bisa Dobson, a Registered Massage Therapist and a Combined Decongestive Therapist, who is certified to treat lymphedema. Bisa spoke to our team about her journey and the salient points to know about lymphedema.

The excerpts from the discussion between Bisa Dobson and Rajiv Maheshwari, Co-Founder, From The Experts Mouth are available in this post. The video of the conversation, as part of the Unleash With FTEM series, is available on our YouTube channel and is also embedded towards the end of this post.

Understanding Lymphedema

March is celebrated as Lymphedema awareness month. So, let’s start by understanding what exactly is Lymphedema?

Lymphedema can be understood by splitting the word into two – Lymph and Edema. Edema essentially means swelling and lymph refers to the Lymphatic System. It occurs when the lymphatic system is damaged or compromised, and there is swelling in the body, as a result of this. Fluid gets stuck in the body and has nowhere to go, causing swelling and pain.

What is the lymphatic system, and what is the impact of irregularities in the functioning of the lymphatic system?

Lymphatic system is a key circulatory system of the body that works very closely with the cardio-vascular system (heart). Blood vessels and lymphatic vessels work together, but people are much more aware of the former, as compared to the latter. The lymphatic system is responsible for several things such as immune system, absorption of fat in the digestive tract, removal of cellular waste, and maintaining the fluid balance in the body.

What are the causes of swelling and Lymphedema?

Swelling can occur due to lots of conditions, and may not be only on account of this disease. There are two types of Lymphedema: primary and secondary.

Primary Lymphedema

Primary Lymphedema is caused by genetic anomalies or malformations of the lymphatic system.

secondary Lymphedema

On the other hand, secondary cases, which are more common are caused by trauma (i.e. injury or damage) to the lymphatic system.

The most common cause of secondary Lymphedema in the Western world is cancer treatment. It is important to note that sever burns and morbid obesity can also cause Lymphedema.

Awareness and Diagnosis

What is the state of prevalence and awareness of this disease and how is it diagnosed? Since it is often preceded by a trauma or another disease such as cancer, is the awareness lower?

A diagnosis is often one of exclusion, that is given after several tests are conducted to rule out other conditions or causes. This makes it very difficult to identify it. Lymphedema cases are often missed or under diagnosed as the awareness is low, even among the doctors and medical staff. There is a relatively new diagnostic method called Lymphoscintigraphy that helps in its detection. But, the principle of exclusion is followed traditionally for diagnosis.

A combination of these factors implies that patients can suffer for years before it is diagnosed. This is why we need to spread awareness. The awareness levels of doctors and the medical fraternity needs to be enhanced on various fronts. For instance, until recently, the medical textbooks exclusively dealt with diseases in the context of fair skinned people, and did not address the nuances of the same disease when it affects people with darker skin tones, thereby excluding majority of the people in the world! This needs to change and the curriculum needs to take into account the world that we live in.

Cure for Lymphedema

What is the cure for Lymphedema? Can Lymphedema be prevented?

There is currently no cure. However, in the context of cancer patients, through joint consultation between the cancer and Lymphedema specialists, the risk of developing it can be greatly reduced. This does not happen seamlessly on the ground, and is more common in Europe or in teaching hospitals in North America.

Self-management of the disease is key as there is no cure. There are various strategies patients can use to reduce swelling, alleviate pain and improve their mobility, including: the use of compression garments, self-lymphatic massage, meticulous skin care, eating well, and exercising in moderation, etc.

Lymphatic surgeries (e.g. lymphovenous bypass, lymph node transfers) are also an option, for eligible patient, though some surgeries are still considered to be in the experimental phase.

The Challenges for Patients

What are the challenges and lifestyle changes from the perspective of patients?

The most important issue is lack of awareness patients have about the realities of life after a successful cancer treatment. Adjusting to the revised routine and the ‘new normal’ of life with the disease can be very difficult to get used to. However, despite the mental, emotional and physical challenges, people can live full and active lives.

In terms of lifestyle, slowing down in order to find the right balance to manage their symptoms well is important. People living with Lymphedema can participate in any activity or type of exercise they desire to, but it is imperative that they increase their level (i.e. the intensity, duration and frequency) of activity incrementally. Slow progression is key.

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The Journey and the Career

How did you get into this field and how has the experience been?

I myself had Lymphedema that was not diagnosed for quite some time, after I twisted my ankle playing baseball and the swelling didn’t go away. I was already a massage therapist so deciding to become a Lymphedema therapist was easy for me. I love this work since it allows me to give back to the community that I really care about.

I describe my work as happy work, even though I work with cancer survivors, because my patients always leave feeling better and happier than when they came in. I love that I have the opportunity to help them by relieving the pain and discomfort they experience.

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What kind of qualities do you find in caregivers? What has helped you do well in this field and what are the challenges you have faced? 

One needs to be empathetic and find the vicarious joy by helping others. Everyone has to find their own lane and this profession is generally good for people who are passionate about helping others, or at least enjoy helping others. You need to enjoy being around people, even if they are not in a good mood or you don’t particularly like them.

You have to find what works for you and your personality. However, in this field, self-care is super important and when you are off work you need to do things that nourish your spirit and soul, and take care of you as well.

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What are some of the initiatives that you are involved with?

I am passionate about raising more awareness about Lymphedema, and CONVERSATIONLY: Thriving With Lymphedema – a platform I co-created with my friend Deborah Peniuk, a Breast Cancer Suvivor and Patient Advocate.

CONVERSATIONLY is all about providing education, support and community to people everywhere living with Lymphedema. We want to do our part to spread the word and help others. For anyone out there who wants to learn more about Lymphedema or thinks they are affected by the condition, please reach out to us here.

Note: This information is provided for educational and informational purposes only and does not constitute providing medical opinion.

Unleash With FTEM – Watch The Full Video

The above are excerpts from the conversation between Bisa Dobson and Rajiv Maheshwari, Co-Founder, From The Experts Mouth in this episode of ‘Unleash With FTEM’

Check out the playlist of Season1 of UnleashWithFTEM.

Subscribe to the channel for more!

About Bisa Dobson

Bisa Dobson is a Registered Massage Therapist in Toronto for more than 2 decades, and for the past 9 years her primary focus has been helping Lymphedema patients safely and effectively manage their symptoms.

When Bisa is not seeing patients, she can be found growing her online wellness business, serving clients on their nutrition and health journeys, and expanding her latest passion project: CONVERSATIONLY: Thriving With Lymphedema.

More from the Unleash With FTEM series:

Watch other conversations as part of the Unleash With FTEM series in this playlist

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