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mind, body & EDS

| living with a rare, invisible, genetic disease |

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Autonomic Dysfunction

“Oh, You Can’t Eat That?” – My Food Intolerance Journey

When I was finally diagnosed with Ehlers-Danlos Syndrome in 2014 after 6 years of investigation, it also brought several other diagnosis that are known to go “hand-in-hand” with this connective tissue disease. EDS is a congenital disease (genetic) and is multi-systemic due to it affecting the strength of collagen (structural protein) throughout the body (collagen makes up all of your skin, organs, tendons, ligaments, bones, blood vessels etc.) [source: http://ehlers-danlos.com/eds-types/]. In simple terms, EDS causes all the strong collagen in your body to be instead, extremely weak, stretchy and easily breakable. Therefore, many patients who have EDS have problems with their digestive systems.

Prior to my diagnoses, throughout my time at the University of Leeds studying for my undergraduate degree my health began to spiral into decline. Over the three years (2011-2014), I was suffering from a variety of symptoms: extreme fatigue, trouble sleeping, bloating, abdominal pains and cramping, nausea, vomiting, muscle fatigue, muscle and joint pain, hair falling out, bleeding gums, brittle flaky nails, grey complexion, constipation, diarrhoea, excessive sweating, heat intolerance, anxiety, depression, concentration difficulties, brain fog, headaches, migraines, palpitations, dizziness, fainting and syncope episodes, hypoglycemic attacks, chest pain, flushing, unexplained full body or partial body rashes, hives, itching tongue and mouth etc. I thought it was completely ‘normal’ to feel this way after I ate and continually throughout the day as I didn’t know anything different – I know, crazy – but how is a person supposed to know that it isn’t ‘normal’ if you’ve just been in one body your whole life feeling a certain way? What is considered ‘normal’ to one person could be completely ‘abnormal’ to another.

Continue reading ““Oh, You Can’t Eat That?” – My Food Intolerance Journey”

Change: The Battle of Acceptance

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“You let time pass – that’s the cure. Change can be difficult to accept. You survive the days. You put one foot in front of the other and get on with it. You float through the weeks and months wondering if your life will ever go back to what it used to be. And then, one day you find yourself alone on a bench in the sun and you close your eyes and lean back and you realise that you’re okay. You realise how far you have come. You realise you’ve just fallen onto a different path leading you to your true destination. You realise, ‘I can do this’. Behind every smile there is an untold story. Sometimes it’s a mask to hide pain and suffering. Sometimes it’s a true reflection of happiness.”  • Laura Lee •

Continue reading “Change: The Battle of Acceptance”

Jetting Off to D.C. 

Time to jet off back to Washington D.C. for my first official post-op neurosurgeries and brain surgery check-ups! I’ll also be attending some Gala events and will update you on my patient advocate role soon. Keeping my fingers and toes crossed that our 3 weeks stay won’t turn into an unexpected 9 months this time around…Wish me luck! 🇺🇸✈️

#FourMonthCheckUp #Neurosurgeries #BrainSurgery #EDS #SpinalFusions #Chiari #ICH #BrainClot #Stents #HealthJourney

Lumbar puncture, road trip to Virginia and tornadoes!

Apologies to you all for not posting an update this last month. It has been a pretty hectic time for me and I have been unwell for several weeks. I am finally feeling a little more myself again and have some news to catch you up on!

Continue reading “Lumbar puncture, road trip to Virginia and tornadoes!”

Lifesaving Neurosurgery Success!

I am relieved to announce that my neurosurgery that took place on Wednesday 13th January at 7:30am was successful, even though there were many unexpected serious life-threatening complications that occurred during the five hour operation. The specialist neurosurgeon expressed that he was amazed how I even made it alive here to the USA Continue reading “Lifesaving Neurosurgery Success!”

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