As the Summer starts to come to a close, we've got the second blog post for the topic - holidays and travelling. This month's blog has been written by Anna about her charity work in Ghana. Thank you Anna for taking the time to write this for us.
I was diagnosed with lupus in 2004 and after six months of being very unwell, I began treatment and started to feel a lot better. I met my now husband in 2006 and he had just started his own international development charity working in Ghana, West Africa. I just finished a degree in communications and was very keen to work with the charity promoting the work they do. But in order to do that to the best of my ability and to achieve the best outcomes for the organisation I felt that it would be great for me to travel out to Ghana to see the projects first hand.
Knowing that I was going to a developing county meant getting a load of inoculations. I went to my GP, explained my medical situation and as such was recommended to take Malarone as an anti-malarial drug, at £3.00+ per tablet and going for 10 weeks meant it was an expensive option but definitely the best one. I was sent to another clinic for a yellow fever vaccination and while sitting the chair with my sleeve rolled up and the needle in the nurse’s hand she asked me casually if I was on any medication. When I told her, 150mg of Azathioprine, 5mg prednisolone and 400mg of Hydroxychloroquine, her hand suddenly shot back and she told me in no uncertain terms that I could not have a yellow fever vaccination as its one of the few live vaccines given and due to my immunosuppression I’d most likely contract yellow fever and die!
Back I went to the GP who told me that all he knew about yellow fever was that he guessed you got a fever and assumed you go yellow - not very helpful. But he made enquiries with the School of Tropical Diseases who’s helpful advise was “She can’t have the vaccine, she’ll die and she can’t go to Ghana without one because she’ll die’
I felt this all sounded very melodramatic and made my own enquires about the prevalence of yellow fever in West Africa. Outbreaks are rare and the disease kills so quickly it has little chance to spread. When I went to Ghana in 2007 I was told there hadn’t been an outbreak in 15 years. So off I went and 7 years later it’s the best thing I’ve ever done. I’ve now been to Ghana 10 times, living in rural villages with no running water or electricity. I’ve worked with the charity to provide hundreds of families with clean water and access to sanitation.
We’ve build schools and clinics, provided scholarship and education programmes and yes at times it was really hard, stomach bugs, intense heat and humidity, terrible food, snakes and everything else you can imagine living in the bush - but I have no regrets. I’ve always said I have lupus, it doesn’t have me. And even after coming back to work in the UK, losing my job due to nephritis, 8 months of chemotherapy last year and days where I feel tired and sick of being sick I’ll always know I did something good and challenging, had amazing adventures and met wonderful people. Living with lupus is knowing your own limits, not the ones decided for you.
We'll be continuing to share people's lupus stories for September and October. We'd now like people to share their stories about going through pregnancy and having children with lupus and any challenges this created. If you'd like to share your story, please email it to paul@lupusuk.org.uk
One or two stories will be chosen for each month. Please send a photo of yourself along with your story.
Myths of Lupus
