Pam was diagnosed with Granulomatosis with polyangiitis when she was 34 – and had never heard of it, despite being a nurse.
As a fit and healthy 34-year-old mother of two kids aged 7 and 5, I thought I’d started to go a bit mad when I was having joint pain that seemed to move to different areas! It would be my wrist one day, my ankle the next. Maybe it’s just my age? I decided to visit the GP once it really started to bother me. I had recently been on antibiotics for sinusitis, so they put it down to a reactive arthritis.
The pains continued and my joints also began to swell, so I returned to the GP and they referred me to rheumatology, who commenced medication for palindromic rheumatism. I was going off on holiday to Florida with the family and suddenly my eye became very red and painful, but my mind was put at ease when the GP and optometrist advised me that it was inflammation due to my new diagnosis and that it was ok to go.
I had to contact the rheumatologist due to my eye worsening, so they saw me as soon as I returned. I think the pieces of the jigsaw started to fit together and suspicion arose about a potential new diagnosis round about then. I was seen urgently by rheumatology and ophthalmology and commenced on new meds and more blood tests were done.
Shortly afterwards I had a phone call to come into hospital. My husband came along with me, and we were told that they had discovered I had Vasculitis, GPA (Granulomatosis with polyangiitis) to be exact. This was all new to me, even with being a nurse I had never heard of it.
My blood tests along with my symptoms had confirmed things. My kidney function was now affected which meant I needed an urgent biopsy and was started on both intravenous cyclophosphamide (a very potent drug used to suppress your immune system) and high dose steroids. I was shocked, I am normally fit and well…. I don’t even get a cold very often!
I became unwell with the treatment and required a stay in High Dependency due to the drugs disagreeing with my liver. It was all very scary not being able to see my kids and not knowing what the future was to hold. After a stay in hospital and eventually finding medication that seems to agree with me, I am now 6 years down the line. I take methotrexate and steroids still but have kept well since.
After coming to terms with having a lifelong illness, I began to look for support as I was keen to get involved. I eventually came across The Lauren Currie Twilight Foundation. I plucked up the courage to go along to a support meeting and was made very welcome and took my husband along to the next one. We signed up for the wellbeing weekend, it was amazing. We have both made friends from coming along and it is great to be able to share my story with others who have been through similar experiences and who have to live with the same daily struggles. We have been lucky to have had a short stay at the respite cabin which is provided by the Foundation for patients and carers of those with vasculitis. We have helped out with some fundraising, which goes towards the foundation and the services they provide, and we hope to take part in more.
It is sometimes hard as I look perfectly healthy from the outside, but for that I need to take a lot of medication with regular hospital appointments and blood test. I am so pleased I took the first step and went along to the group. We have kept in touch during lockdown too whilst we were all mostly shielding. I would really like to thank Grant & Adrienne Currie, the Foundation has really made such a difference to me, I love being part of the group.
We were told that they had discovered I had Vasculitis, GPA (Granulomatosis with polyangiitis) to be exact. This was all new to me, even with being a nurse I had never heard of it… I was shocked, I am normally fit and well…. I don’t even get a cold very often!
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