I was born in the North of England a very healthy 9 1b 2 ounces and a home birth. My parents live in the country. I was breast fed and spent a lot of time at my grandparents farm as a child. So my immune system should have been healthy.
I was never out of hospital and my GP knew me very well. At age 2 yo I was in an isolation unit with amoebic dysentery. I got every childhood disease and was so greedy that I contracted rubella and measles at the same time. Holy moly. That is me, second from the right at the time of measles incubation!
We were on holiday in North Wales with my best friend Janet and her brother Adam, next to me and my bro Gavin on the end at the left.
It may help to know that my dad is one of 9 siblings. He has 6 sisters whom all have anti-phospholipid syndrome and one aunty with MS. Auto immune disease is in my family. I'd never given it a second thought. All my aunties have had DVT'S (deep vein thrombosis), leg ulcers in their 30's and 40's, phlebitis and one aunty had multiple pregnancy losses like me. You never think it will happen to you. That was my dads family. My nanna and grandad both had leg ulcers, clotting issues with DVT but they had 9 kids!
At 13 yo I developed eczema and a latex allergy. I used to wash the dishes in my uncles pub (with rubber gloves).
At 24 yo I got hay fever. And kiwi fruit were not my friend either!
Then at 35 yo I got asthma.
Do you see where this is heading?!
Meanwhile my little bro and sis were formula fed, my sis hated the farm and they have no atopic or immune system issues. Oh yes I got the best genes in my family....not!
I'm from a lovely part of Northern England called The Lake District (Cumbria is the county). Its where Beatrix Potter and Wordsworth lived. This is me sat in the doorway of Beatrix Potters' House.
I used to do lots of mountain walking. We have the highest mountain in England, Scafell Pike and I climbed it as well as many others. I used to be very fit.
Here's Coniston Old Man, another of my favourite mountains. Its a YouTube clip filmed by someone I know on Twitter, Paul Steele, The Bald Hiker.
I'm living my life vicariously through these mountain climbers. I can't quite see me doing any of this again!!!!
In this lovely part of England we also have a Nuclear Reprocessing Plant called Sellafield (Windscale is the old name). Its about 100km from my village. It's at Seascale that red dot on the west coast of Cumbria.
In the 1970's there were many radiation leaks, supposedly minor but I guess we'll never really know. I remember watching a documentary produced by World in Action. It was a TV expose series. There are clusters of childhood leukaemia's and cancers (non-hodgkins lymphoma's) from the 1970's and 14 times higher than the national average in Cumbria. Fourteen times!
Holy Moly!
The next bit I'm going to tell you is really quite extraordinary.
Remember the holiday photo with me and my brother on holiday in North Wales with my friend Janet and her brother Adam. Janet developed SLE (lupus) at 11 years old when we were on girl guide camp together. She has been very very sick with it. I may get Janet to tell her story to you in the future. I think its important to get permission before doing so. BTW I have changed names to protect identities.
We also went to a very small school in a village outside Kendal, Cumbria. The school had only 100 pupils. Another girl in Janet's year (one below me), Mandy also contracted lupus. Hers is more skin/cutaneous/discoid lupus. She can't go outside in any sunlight. Her car has special UV filtered glass and her house is in darkness.
So there are 3 of us, all the same age from the same very small village who all have SLE (Lupus). I think they are very interesting stats.
I also know of 2 others in my county. One I used to work with as a Midwife and the other I met by chance when I was home last time. I'm sure thee's many more.
It's quite a story isn't it?!
I'm really pleased I've decided to do this blog. I never ever thought I'd do it. But I am in remission for the first time in 9 years. When my disease was active there is no way I could have contemplated anything like this. Getting out of bed and getting to work was a big ask most days. Anyway that's enough for now. At least you've got the back story. It may help some of you to understand where your Lupus may have come from.
But there is a lot more to come....
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