PhysioPod Catch Up with Ramin Shayan MBBS, PhD (Uni Melb), FRACS (Plastics) Associate Professor at University of Melbourne

Just ahead of June - Lipoedema Awareness Month, PhysioPod chatted to Ramin Shayan to find out what news he had for their readers...

Background:

In November 2021, PhysioPod shared the important new study “New discoveries make steps toward lipoedema diagnosis and treatment” published in the International Journal of Obesity, which was led by Dr Tara Karnezis and Associate Professor Ramin Shayan. The study identified a stem cell in lipoedema and a gene that drives excess fat growth – elements key to diagnosing and treating the condition.

Dr Karnezis said of the study “Our findings confirm, consistent with the lived experience of families, that lipoedema is a legitimate medical condition, and that it is not the same as obesity – our team has identified a key stem cell and some of the genetic and molecular mechanisms that underpin it.”

Hi Ramin, it’s been a little while since we communicated and I wondered if you had anything you would like to share with our readers with June being Lipoedema Awareness Month?

Hi Mary, yes indeed! There is a lot of activity in lipoedema coming up in Australia in the next month or so. On the 27th May, I am appearing in a panel with esteemed colleagues Tobias Bertsch and Håkan Brorson at the Australian Lymphedema Association annual meeting in Hobart, and in June in Sydney with Karen Herbst.

Excellent, what is on the agenda to be debated in Hobart?

I will be debating the international consensus on changing the name of Lipedema/Lipoedema. I will be arguing that we have shown in our research that lipoedema is not the same as obesity and that whilst the lymphoedema component is related to, or exacerbated by obesity in some cases, in NON-obese lipoedema patients there is a definite cohort with lymphoedema, that is a genuine part of the disease, whilst it may not be a direct cause of the disease. I will preface our up-coming paper outlining my 10-year single surgeon treatment experience of lymphoedema in non-obese lipoedema patients. 

Excellent, do you have a specific question for the panel?

Yes, I will ask the question, why we, a cohort of middle-aged, non-lipoedema suffering males are “mansplaining” to patients who know their bodies better than anyone what they should feel. This disease occurs in women in 99% of cases and we need to respect that for patients who describe swelling in their tissues, it is very real and very troublesome.

Have you expressed this opinion in the consenus before? 

No. Despite being one of the two Australian nominees, I have not yet been contacted for an opinion.

Do you feel that there is the science to back up the need to distance Lymphoedema from Lipoedema?

Not quite yet. I will discuss the fact that, even if it does end up being the case that lymphoedema needs to be distanced from the name of lipoedema the jury is still out on the science - in fact the real molecular science has only just started to come in! 

Have many papers to you have to back this up?

Well aside from the paper we have published in the International Journal of Obesity, we have four significant papers in the pipeline that will be of further interest to the field. It is too early yet to make the conclusion regarding an international consensus, as we are only starting to unlock the mechanism underlying lipoedema and there is a long way to go yet. Without biological markers, animal models, diagnostics and new therapeutic avenues to explore, the field will not advance. As the recent election in Australia has shown, the age of middle-aged men dictating to women about how to feel about their bodies is over. Science is the only true arbiter here and it must be given adequate time to do its work. The type of high-end science needed does not happen overnight – it can take years and it takes adequate funding.

Consensus cannot, by definition, exclude differing or dissenting opinions, and I, for one, am not yet convinced - based on our (Dr Tara Karnezis’s and my own) own scientific research - that a conclusion can yet be made either way. This will come in the fullness of time, but we must not jump the gun in our desire to move the field forward.

What are some of the arguments that might suggest that lymphoedema is at least involved in the disease process in Lipoedema? 

Great question! Of the nearly 500 LVAs I have performed, more than 60 have been in non-obese lipoedema patients with good effect on reducing interstitial swelling based on independent objective analysis by therapists and by patient accounts. This has been consistent with improved QOL measures. This surprised me and got me thinking regarding the role of lymphoedema in lipoedema, whether it is causative or just a bystander effect, it is still important and may perpetuate the disease.

In addition, the rate of secondary lymphoedema of the upper limb occurring after breast cancer treatment is over four times that of non-lipoedema patients on my cohort; and finally, our familial gene studies show that…. Well you will have to wait for that as they are manuscripts in preparation. Sufficed to say, we are only now scratching the surface of the Science. Let’s give it a little bit of time to mature and we can come to a measured opinion together - a real consensus.

That is amazing, thank you so much Ramin. I look forward to seeing and sharing the 10 year published results