My Journey & Why I Want to Help You!

I was diagnosed with a rare autoimmune blistering disease called Mucous Membrane Pemphigoid (MMP) in 2020 at the age of 48 after a 4 year battle with severe dry eye, light sensitivity, and trichiasis which was causing severe irritation in my left eye. 

From that day forward my life would never be the same again. My right eye was already congenitally scarred and had never been functional, and now my one and only 'good' eye, was irreversibly scarred from the disease causing a shortened fornix, shrunken conjunciva, and constant irritation from trichiasis.

I was started on powerful immunosuppressive therapy and still continue to attend hospital every month for treatment due to the risk posed with only having one functional eye. I was doing well until a flare in 2024 removed the graft I had inserted from my mouth to turn out the lower lid to prevent the eyelashes affecting my eye. 

Despite the treatment to manage my condition, I've continued to have inflammatory symptoms triggering ulcers, sores, hives, dryness, itching, and so on in other areas of my body over the last 8 or so years which haven't responded so well to conventional treatment. 

Enough was enough; after a long conversation with my immunologist and being informed that my only option was to add another medication to the mix which had unpleasant side effects, it was time to take things into our own hands. 

Paul and I had already been adopting a vegan whole food plant based lifestyle for some time and had been doing various fasting diets to try to eliminate my symptoms, yet still I couldn't shift the chronic inflammation that was causing my symptoms. I felt I had to take more drastic action and so I searched around and after extensive research, we embarked together on an anti-inflammatory raw vegan autoimmune diet to eliminate my symptoms!  

This was a diet like no other! We had never eaten a whole diet full of raw food and been unable to cook, and never been into drinking green smoothies consisting of kale and spinach for breakfast! We had to eliminate all our familiar foods of legumes, grains, nightshades, and alliums (the latter 2 of which are known to affect people with my disease in particular).

After just days on the diet my light sensitivity had significantly reduced, and my skin was feeling super soft and smooth, however, hormonally I wasn't doing well; I started menstruating heaviliy which lasted over 4 weeks, lost quite a bit of weight, experienced immense appetite suppression where I just didn't feel like eating anything and felt a significant change in mood. This continued for quite a few days until we decided to reintroduce the nightshade and aliums in order to make the diet more enjoyable.

Things started to get better. My appetite came back, we were enjoying drinking the green smothies and found our rhythm with what we liked to eat, whilst still trying new things. 

Unfortunately my symptoms didn't get any better after continuing the diet for a further 2 weeks but doing the diet did help us to implement a raw food diet and learn some great skills to add to our whole food plant based diet we were going back to.

I realised that what was critical for me was the support I had to maintain my energy and motivation to stick to the diet. This was crucial and talking to so many others, this element was often missing when trying new solutions to autoimmune management.   

It's so common for people to report how solutions they try don't work but the main reason anything doesn't work is typically because we give up too early and don't persist with the process or regime once we hit challenges. 

After finishing the diet, I didn't feel dispondant but rather realised this particular solution wasn't going to take me any further. However, I got my head back into the research and rummaged around my own lifetsyle medicine toolkit and realised I had a more evidence based options to explore such as reducing my stress levels, getting more restorative sleep, and looking at how the way I live my life could be impacting the quality of my health and well-being.

Whatever solution you're looking for there are ways and means to get you there when you find the right support and resources to do it!