Lymphedema: It’s all about the skin
An interview with Professor Terence Ryan
In discussion with Dr. Anna Towers and Anna Kennedy
Introduction – Within the international lymphedema community, there are a handful of pioneers who have laid the groundwork and paved the way for the researchers and clinicians behind them. It’s important for us to acknowledge and honour their tremendous contributions. We had the opportunity to chat with Professor Ryan via Zoom, to learn more about his work and his thoughts about where lymphedema is heading, from a dermatologist’s point of view. Hopefully his work will inspire more dermatologists to become involved in the care of lymphedema.
QThere are so many disciplines of doctors that are involved in lymphedema care. In your opinion, is that why lymphedema is still considered to be an orphan, with no real home in the world of medicine?
Yes. Of course one of the problems is that physiologically speaking, the lymphatics haven’t been well seen. It’s amazing that you can take even the best textbooks of dermatology, with any drawing of the skin and show blood vessels, hair and everything, but they never put in lymphatics. So it’s just not seen, it is not visual to people by any system. There is still tremendous ignorance of its existence.
QWhat do you see as the way out of this situation: that there’s no one discipline that takes ownership, and that’s taught properly about the lymphatic system? Our success in India (and therefore lymphedema) is going to get more and more publicity. The Bill Gates Foundation has given money to increase the distribution of lymphedema care. The World Health Organization (WHO) has now taken it on board and is really interested in our good results. There will be a paper published in the British Journal of Dermatology about our work. I hope dermatologists will realize that it is something they can deal with, and in my writings I tend to emphasize the focus on the care of the epidermis. I do think that the
epidermis is to some extent, the conductor of not only blood supply but also lymphatic drainage. I don’t think people realize that the epidermis is the key focus of the treatment approach in India.
QFor disciplines to advance, they need to be recognized as such with specialists. Do you see lymphology itself, becoming a specialty?
Well, I think lymphology already is a specialty, but it’s definitely a minor specialty, just as dermatology has also been regarded as a minor specialty. But it is getting better. No doubt lymphology will get better recognized too as people begin to understand it. There is still a great deal of ignorance that needs to be overcome.
QOne of the challenges in Canada getting physicians interested, is that there’s no pharmaceutical agent we can give that will help lymphedema. So it’s marginal in the view of physicians, as something they should become interested in. We have plastic surgeons now becoming interested in physiological procedures, and that’s beginning to increase interest, but it is a slow progression. It was shown in India that these people are disfigured. They have large limbs but
they also have odor and there is a tendency for them to be neglected by their families and community. I think the time is coming when people will realize that the herbal soaks that we are using can be available and effective worldwide. We’ve proven that they really work in the care of the skin, and it’s the care of the skin that resulted in an improvement of the lymphedema. We’re beginning to show that bandages and compression are not the most acceptable therapy. They are too difficult and too expensive in countries like India, and so we have to rely more and more on just simple soaks and care of the epidermis, plus movement. Of course, in India, we use yoga, but any form of movement of the skin is helpful. So a lot of our approach is self-treatment. The prescribe-able element by doctors in India is sometimes a little bit of anti-fungal or steroid cream for the eczema, but it’s all related to care of the epidermis. Mostly we are using medicinal herbals and we are promoting movement by yoga, which is culturally acceptable in India. And I think both are becoming more and more acceptable worldwide, perhaps even in Canada.
QCellulitis is the most serious consequence for patients with lymphedema. If there was one message to give patients to try to minimize that risk, what would that be?
Number one would be meticulous care of the skin. But also I think a friendly approach from clinicians is very important. One of the reasons we have such success in India is that patients enjoy being with us. They travel far and come from all over the place and then they also come back to us. We have very few people who don’t come back and that is because we’re creating a very friendly environment for them to feel cared for.
QIn North America, the emphasis seems to be on manual lymphatic drainage and compression, but skin care unfortunately sometimes takes a backseat.
I think you can do all the manual compression (and of course, it helps), but if you ignore the care of the skin, then you’re not going to really get a good result.
QIn your vision, where do you see chronic edema/ lymphedema care heading or even 50 years from now?
Well, I hope that the important LIMPRINT study results help us understand that we’re dealing with chronic edema rather than lymphedema, and that everybody over the age of 60 is going to have some edema. Lymphatics and the blood supply are all playing a part. Dr. Narahari and myself wrote an editorial in the recent issue of British Journal of Lymphology, focused on LIMPRINT results. I think Professor Christine Moffatt is quite right in reminding us that there’s a lot of chronic edema, which isn’t due to lymphatic filariasis or due to cancer, and that there are many genes playing a part. There is a genetic background at play in regards to whether you get lymphedema or not.
Only about a third of the people with or without cancer actually get lymphedema,
and that, I believe, is because they’re genetically susceptible. So I think we’re beginning to understand that in the background of all this, you need a healthy and effective lymphatic system, and that depends both on the genetic background as well as the interaction with many systems in the environment. So everything in the environment, which affects and produces lymphedema, depends to some extent on your genetic susceptibility.
Q
What is your opinion on the possibility of a cure?
Once we know what genes are affected, it’s possible to begin to think of a cure for lymphedema. But at the moment we haven’t got a cure based on the genetics, but it will come.
Q
And that would be ideal, rather than the traditional and surgical treatments we have now to manage the disease?
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We really don’t know what the reason for susceptibility is and why some people with breast cancer don’t get lymphedema (in fact up to two thirds of people with breast cancer don’t get lymphedema). The other factor is that for many people, the onset of primary lymphedema doesn’t become evident until they get to four or five years of age. And it is when they get to full size (the late teenage years), that there is the greatest effect of gravity on the venous system. It’s a very important background factor. Gravitational factors in the venous system are a determinant of the leakage and the overload of the lymphatic system. So I think size and full growth plays a part, often through the venous system.
Lymphedema in the elderly is largely due to overloaded lymphatics by the venous system failing rather than necessarily the lymphatics being at fault. They’re just overloaded by venous hypertension, which is common in people who just sit with their legs down or who don’t move. This is common in the elderly.
QWould you like to say anything in signing off to our readers?
I think the world probably thinks I’m a bit of an eccentric. But I’m a great believer that in fact many of the things I believe in, other people will believe in, in the end. I certainly encourage you to read the Journal of Lymphology Editorial, and also the British Journal of Dermatology article (from India and the WHO), which has just been recently published. LP
Editors Note
For links to the Journal of Lymphology and British Journal of Dermatology, visit https:// canadalymph.ca/pathways-references/
Biographies
n Terence J. Ryan, DM, FRCP is Emeritus Professor of Dermatology at Oxford University in Oxfordshire, England.
n Anna Towers MD, (Montreal, Quebec) runs the Lymphedema Program at the McGill University Health Centre.
n Anna Kennedy, (Toronto, Ontario) is the Editor of Pathways Magazine.
Interested in learning more about lymphedema heroes?
I encourage you to read other pioneers we have featured:
• Miles Johnson: Forty years of devoted research by John L. Semple (Pathways Spring 2015)
https://issuu.com/canadianlymphedemaframework/ docs/final_copy_pathways_spring_2015
• Saskia Thiadens: A tribute to Saskia Thiadens: Honouring an inspirational hero (Pathways Summer 2016) by Bonnie Lasinski
https://issuu.com/canadianlymphedemaframework/ docs/b746_clf_pathways_summer2016_client
https://issuu.com/canadianlymphedemaframework/ docs/pathways_summer_2014_final
• IAD: Hard work and Hope – Lymphatic Filariasis Treatment in India (Pathways Summer 2014) by Rosemary Kelly.
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