I have two chronic diseases – Lipedema and Ehlers-Danlos Syndrome (EDS). Lipedema (spelled Lipoedema in Europe and Australia) is thought to effect over 11% of all women world-wide! And I bet you’ve never heard of it, right? Lipedema is rarely diagnosed, so the awareness of this disease needs to be increased. Ehlers-Danlos Syndrome is considered a rare genetic disease – thought to effect less than 1 in 5000 people. But in 2009 when I was diagnosed, it was thought to be 1 in 500,000 – so again…. diagnosis and awareness is needed.
Somehow the two diseases are related, and they are considered comorbidities of each other – so there is a large number of women who are facing the same issues that I am.
I run a number of support groups on Facebook for these issues. These are typically private groups to protect the privacy of the members. But we’ve gotten to the point where advocacy is needed in other mediums – and I hope to reach ladies who haven’t yet been diagnosed so that they know they are not alone.
Since EDS is a genetic disorder where the body does not make collagen correctly, and Lipedema is thought to also be genetic, many afflicted with these issues believe they are at the mercy of their doctors and prescriptions, and chronic pain is forever in their future.
But I have a controversial idea that much of our pain and symptoms are a result of food sensitivities. This idea began tickling my mind back in 2003, and in 2019, I presented some of my ideas and the fact that I was following the Autoimmune Protocol (AIP) at the Fat Disorders Research Conference, and my ideas truly resonated with the Lipedema Ladies in the room. I began having more and more Lipedema ladies follow my journey on Facebook, and then more and more success stories from those taking my suggestions to heart began flowing in!
In a nutshell – Poor collagen structure of our stomachs makes us more susceptible to leaky gut. Leaky gut leads to food sensitivities and food intolerances. Food sensitivities and food intolerances can activate an autoimmune response and something called Mast Cell Activation Syndrome (MCAS) which both can lead to a HUGE array of symptoms! One of my last “flares” led to my fingers feeling like rubber, tendon, ligament and overall muscle and “skin” pain. Come to find out – it was a histamine response to the – what anyone normally would call – “healthy” foods I was eating.
I hope to share this information with you, and allow you to also heal!
