Sarah suffered from a number of illnesses for several years before she was finally diagnosed with Eosinophilic granulomatosis with polyangiitis (EGPA, previously called Churg-Strauss).
My name is Sarah. I’m 38 and I’m from Aberdeen. I have been thinking a lot about when my vasculitis journey began, because when I was diagnosed was not when it started. Looking back, I think it was New Year 2002. I was not well over the holidays and noticed my chest was very rattly. Thinking it was my asthma or another chest infection, I called my GP who sent me for a chest x-ray and gave me antibiotics.
During the night I noticed I was coughing up blood, so the next day my GP sent me straight to hospital where after lots of tests and scans I was diagnosed with a pulmonary embolism (blood clot in lung) and a pleuritic rub in my lung. I was working as a nursery nurse and when I got back to work, I seemed to catch every bug going. I got diarrhoea so much that I was told I had IBS but the medication I was given made no difference.
Fast forward a few years to when I was a nursery nurse for the NHS. Over the 9 years I was there I had all the usual bugs and illnesses that comes with the job, from conjunctivitis to coughs and colds but I seemed to get chest infections and was constantly on antibiotics. I got severe migraines, lock jaw and I got diarrhoea at least once a month. By the time 2013 came around I was in trouble at work for being off sick so much and I got reprimanded more than once.
I have been thinking a lot about when my vasculitis journey began, because when I was diagnosed was not when it started.
I was on holiday in November 2014, I didn’t feel great and I was sick a few times. I also felt extremely tired, but just put it down to being in a foreign country. At home I noticed my leg was really sore and slightly swollen, but my GP assured me it was not a blood clot. Over the next few months my leg got worse. It was so swollen I couldn’t get my trousers on! I was back and forth to the GP in agony and at the point I just wanted to cut my leg off. 3 skin biopsies, lotions, potions, pills and compression stockings (none of which worked) later, I was told I had everything from a beastie bite to cellulitis and suspected lupus.
Finally, 2 long years later I had a muscle biopsy which showed I have EGPA (Eosinophilic granulomatosis with polyangiitis, previously called Churg-Strauss syndrome), which is a rare form of vasculitis and roughly 11 in a million get it. Sadly, it’s non-curable. I thought great, I will get 3 months of gruelling intensive treatment and I will get back to normal but no… 4 years on and I am still not in remission. I’ve been on so many toxic drugs including chemo and high dose steroids (which I’m still on).
Unfortunately, many of the drugs have bad side effects and not only have I lost most of my hair, I have gained 12 stone and have steroid-induced diabetes, which I’m taking a further 3 medications for including insulin. Many of the illnesses I had before my diagnosis are linked to EGPA like the asthma, migraines and diarrhoea and are only controlled with the steroids. I am currently on trial medications and on roughly 30 pills a day, but I remain positive as I have a great team looking after me at ARI who go over and above to help me.
I have met many inspirational people through LCTF most of whom have helped or advised me, and I am so grateful for that and I’m hopeful that brighter days will come.
You might also find these of interest:
If you've just been diagnosed with vasculitis, we can help you with information about your condition and treatments.
If you're affected by vasculitis, we can help. We offer a range of practical and emotional support.
Donate, fundraise, volunteer or take part. Help us support people with vasculitis.