Eosinophilic Granulomatosis with Polyangiitis (EGPA)

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Eosinophilic Granulomatosis with Polyangiitis (EGPA)
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  • What's New in Eosinophilic Granulomatosis with Polyangiitis (EGPA)

    "Living with an invisible illness is a real game changer."

    "You need to find your new normal and adapt to it. "

    Check out my new blog for #VasculitisAwarenessMonth. . Are there any other vascies out there? I'd love to meet you!


    #ChronicIllness #EGPA #InvisibleIllness #Spoonie #Disabled #Disability


    I thought my life ended with Vasculitis, but it set me free

    My story begins on an airplane.

    I was in the second year of uni and flying back from Palma, where I’d visited my then long-distance boyfriend Charlie. I was 19 years old, adventurous, in shape and healthy – apart from the depression and anxiety.

    Sat in the luxury of an Easyjet seat, I felt a digging in my shoulder blade. Weird. It went away, so I didn’t think much of it.

    Fast forward two weeks, when I get off the plane from Iceland. I know – what uni student can afford two holidays in one month!? I worked part-time, and this trip was a gift from Charlie, who wanted me to have my dream holiday. I’d spoken about Iceland for years, longing to bathe in the Blue Lagoon and straddle the tectonic plates. I just didn’t know it would be the last time I felt like me.

    On the journey home, I felt digging in my ribs, which only got worse by the time we’d reached our hometown coach station. The walk home was 10 minutes – I could easily smash that. But that night, I couldn’t. My sailing strength and youthful assumption of immortality dissipated into nothing. First, my boyfriend insisted on carrying all the bags – I told him he was being silly. But then the pain increased, I couldn’t breathe, I was dizzy, it hurt a lot. Our ten-minute journey turned into a forty-minute battle which ended in me staggering through the front door.

    A paramedic comes, but all of my obs and stats were fine. Weird. I took some painkillers and forgot it ever happened, until exactly a week later when I was bawling my eyes out from the pain. It felt like knives had been stabbed into my ribs, and the crying wasn’t helping my already laboured breathing. My mum was terrified, and one ambulance journey and a dose of morphine later, I was in the hospital with suspected pulmonary embolism. Even though they thought I had a blood clot, they wanted me to go away and come back in the morning. Safe to say I stayed there, and after many blood tests, a CT scan, urine tests and a 14-hour wait, they found a light show of nodules in my lungs and gave me the three probabilities of what was wrong:

    1. From all my travelling, I’d got an infection. It could be that a bug (yes, a bug) had made its way into my heart, which was pumping lots of little bugs through my blood system. I still don’t understand that, nearly 4 years on, but okay.

    2. I had an autoimmune condition.

    3. I had cancer.

    Everyone was very much hoping for option number one, as grisly as it sounded, and my mum naturally leapt to option number three and began tearing her hair out. But I wouldn’t get the answer easily.

    Throughout the year I deteriorated, and I’m still recovering from the trauma of it today. The stabbing chest pains continued, and my lung capacity nosedived. I could barely breathe, and a lot of the time couldn’t walk. Blood came out everywhere apart from my ears (small victories), I lost weight, I vomited constantly, and my bowels completely gave up. My boyfriend, who has Ulcerative Colitis, couldn’t believe the pain I was in. Because I had to be near a toilet so often, any plans I made were flaky at best. Charlie had to wash me, bring me sick bowls, help me vomit (and good god does that boy hate vomit!), and help me walk. I couldn’t go out into the cold, and sometimes I even had to crawl up the stairs. The anxiety of going anywhere was overwhelming – I’d gone from flying solo to not wanting to leave my home city. My flakiness made people angry – someone even wrote a whole load of abusive scribblings about me on Facebook the day I was diagnosed, which still traumatises me to this day.

    The girl who sailed, adventured, and flew all over the world died the day she walked off that plane.

    After many hospitalisations and endless tests and scans – I’m talking x-rays, CT scans, ultrasounds, echocardiograms, and to quote 2017 Seren, “enough of my blood to fuel a small island of vampires and enough pee to fill a canal”– my consultant had run out of ideas. I was given a choice that would change my life – to go on medication and hope everything gets better without knowing what it is – or to continue without medication and have a lung biopsy to assess once and for all what was happening to my body.

    I chose the lung biopsy.

    They could’ve done one when this all started, but they didn’t want to perform such invasive surgery on someone so young, which I understand. I wrote in my first ever blog on Vasculitis: “they performed a bronchoscopy (which, by the way, was effing terrible), which then gave me the all-clear for a lung biopsy (which, also, by the way, wasn’t the most fun thing either). Twelve days later, I walked into my consultant’s office and got my diagnosis: Churg Strauss Vasculitis.”

    Ever since that diagnosis day, my own D-Day, on 14th November 2017, I have been adapting to a new normal. I have experienced severe depression and anxiety in direct relation to my condition, as well as stigma, discrimination, and online abuse. I’ve had plenty of infections due to my immunosuppression (I’m talking thumb infections and Scarlet Fever – what’s that all about!?), and gained a substantial amount of weight due to the steroid medication, which admittedly did save my life. I have lost friends and endured many identity crises and breakdowns.

    My life has never been the same, but over time I have adapted to the new normal and figured out how to live life to the best of my new ability. Things may have changed, but that’s okay – I’m happy now.

    And hey, at least I got to fully enjoy my dream holiday in Iceland. #Vasculitis #ChurgStrausssyndrome #RareDisease #ChronicIllness