A Journey Through Vasculitis – Our Care Coordinator Kelly’s Story

In December of 2010, I found myself caught in a relentless cycle of infections. Over-the-counter remedies offered no relief, and my immune system seemed powerless against whatever came its way. Then, on New Year’s Day 2011, I was rushed to the hospital struggling to breathe, my body wracked with pain.

For three harrowing days in the high dependency unit, doctors conducted a battery of tests as my symptoms confounded them. Sinus issues, a disfiguring rash resembling burns, and excruciating pain with every movement painted a grim picture. Despite numerous CT scans, blood tests, and X-rays, the root cause remained elusive. The possibility of diagnoses such as lung cancer, emphysema, and COPD loomed large over those seven agonising weeks. I was discharged from hospital on high dose steroids and a weekly chemo injection and referred for follow up from a consultant. Luckily for me, the consultant I had been referred to had recently completed a course on vasculitis. I was diagnosed with a form of vasculitis known as Churg- Strauss (now known as Eosinophilic Granulomatosis with Polyangiitis), an extremely rare disorder that causes inflammation of blood vessels, usually effecting the nose, sinuses, lungs, heart, intestines, and nervous system. Finally receiving a diagnosis was a relief, but it also signalled a seismic shift in my life.

Once an avid gym-goer, swimmer and squash enthusiast, I now found myself having frequent hospital visits, reliant on inhalers and medication just to stay alive. The effects were devastating, I was unable to walk to the toilet without being in pain and struggling to breathe. I could not even have cuddles from my grandchildren as the slightest touch left me bruised and in pain. The dreaded “Devil’s tic tacs” – steroids – became a necessary evil, taking a huge toll on my body and causing rapid weight gain. Within months I had gained over five stone. But just as despair threatened to engulf me, lockdown offered an unexpected reprieve.

Classified as vulnerable, I spent 18 months in isolation, shielded from the germs that had once besieged me. At the height of lockdown, I didn’t even see my grandchildren for four months. Though the solitude was daunting, it provided my immune system with the respite it desperately needed. Slowly but surely, I began to rebuild my strength and resilience.

Yet, the journey was far from over. Complications arose, including kidney failure and Crohn’s disease, adding new layers to my struggle. Despite the setbacks, I refused to surrender to despair. With the unwavering support of my loved ones and a commitment to a healthy lifestyle, I forged ahead. I continue to navigate life’s twists and turns with courage and optimism.