My Lipedema Journey

2009( 23 years old)

2017

1 year after Chemotherapy treatments

and C- section with my first pregnancy.

( 31 years old)

What is Lipedema and how is it diagnosed?

These are the most common questions that I often get asked by women and also by health professionals that are interested to know more about this poorly understood and undiagnosed disease.

Lipedema is a chronic disabilitating disease affecting the subcutaneus adipose tissue of the extremities in females during and after puberty. The disease is characterized by bilateral swelling of legs and/or arms, bruising, and pain.In contrast to lymphedema, the most distal parts remain unaffected. In contrast to obesity, patients with lipedema have a lower risk of diabetes mellitus. The pathogenesis is not well understood. However, hormonal factors seem to play a vital role, as it is an exclusively female disorder. The recent advantages in understanding and treating lipedema are reviewed. [1]

It is extremely difficult to get a formal diagnose for Lipedema as there aren't enough medical professionals that are trained in this condition. The mostly known medical professionals that are able to identify it are Physiotherapists. And that is where I got my "informal" diagnose back 10 years ago.

At the time there was very little to no support for women with this condition and the general guidelines were to wear compression garmets and exercise more and being told there is no cure apart from Liposuction.

What did I do then?

I had to do a lot of research myself to find other support groups that were not based in Ireland and mainly based in the UK or USA. However there was little to no mention about dietary interventions because Lipedema fat is resistant to dietary changes and you will only be able to lose the "non Lipedema fat". It was very overwhelming at the time and I felt very lonely and for many years I didn't do anything and put it at the back of my mind which clearly wasn't because I was still suffering from pain and discomfort along with the frustration of not being able to lose any wegiht off my legs.

What has changed since then?

In 2014 I graduated as a Nutritional Therapist and I learned more and more about Lipedema and discovered certain foods didn't agree with my body and started a more anti-inflammatory approach and reduced my carbohydrates mainly from pasta and rice which gave me some relief in terms of pain managment but not so much for swelling. I wasn't consistant because I wasn't getting any support or positive results on myself so I let go and continue to eat healthy but didn't focus on any specific dietary regime. This is what happens to most Lipedema suffers and they will give up once they don't see results.

However in May 2020 after researching a lot about the Ketogenic approach ,and how it was a possible beneficial approach for Lipedema suffers, I started a plan with the guidance of one of my colleauges and the results were astonishing in terms of swelling reduction and pain managment. I also did intermittent and extended fasting and went on and became a coach then. I have been doing extensive research, training and studies into fasting, Ketogenic diets and their possible mechanism of action for Lipedema suffers. You can clearly see in July 2021 how my swelling increased after pausing fasting and a Ketogenic diet, while being away, along with pain. In 2021 an excellent paper was published by a team of Lipedema Specialist worldwide which clearly stated the benficial impact of a Ketogenic diet for Lipedema.

The effectiveness of a KD on addressing clinical features of LI has been demonstrated in human studies, and shows promise as an intervention for LI. We hope this paper leads to an improved understanding of optimal nutritional management for patients with LI and stimulates future research in this area of study.[2]

And another paper has just been pushiled in November 2021 which brings even more insights on the possible mechanism of actions of Lipedema which could potentially lead to the development of a therapeutic drug in the future but also targeted nutraceuticals.

We found significant differences in gene expression, and lipid and metabolite profiles, in tissue, ADSCs, and adipocytes from lipedema patients compared to non-affected controls. Functional assays demonstrated that dysregulated Bub1 signaling drives increased proliferation of lipedema ADSCs, suggesting a potential mechanism for enhanced adipogenesis in lipedema. Importantly, our characterization of signaling networks driving lipedema identifies potential molecular targets, including Bub1, for novel lipedema therapeutics.[3]

For all the women out there suffering with Lipedema, do not lose faith and get discouraged as research is improving and we have a lot more positive results with dietary and lifestyle approaches alone.

References:

1. Wollina, S. Lipedema-An Update (2019) Retrieved from: https://pubmed.ncbi.nlm.nih.gov/30565362/

2. Keith,L., Seo, .C.A, , Rowsemitt,C., , Pfeffer,M., Wahi.M., , Staggs,M., Judek, D., Gower, B.,, Carmody M. (2021). Ketogenic Diet as a potential intervention for Lipedema. Retried from: https://pubmed.ncbi.nlm.nih.gov/33303304/

3. Ishaq,M., Bandara,N., Morgan, S.,Nowell,C., Mehdi,M.,A., Lyu, R., McCarthy D.,Anderson, D., J. Creek, D., Achen, M.G., Shayan, R., Karnezis, T..(2021) Key signaling networks are dysregulated in patients with the adipose tissue disorder, lipedema. Retrieved from: https://www.nature.com/articles/s41366-021-01002-1