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.