I’m Sheena, I’ve been a member of this forum since it’s early days and was for a few years an administrator, unfortunately due to health issues, a crazy life (running a pub). and losing both my parents in the last 18 months, I had to take a step back.
Expecting to be looking after my parents and now that’s sadly not the case, I feel I have need of and can offer support to all those affected by Hughes Syndrome. I cannot claim to be an expert and therefore, cannot give medical advice, but I do know how Hughes has affected my health, my life, my family, it’s a heck of a rollercoaster ride. 😁😁
I’m now 54 years old, married to Alan my soulmate, my 3 miracle kids and stepson (the child of my heart). Life’s gone on since my original profile was written, my eldest daughter has given me a beautiful granddaughter, who was born after a difficult pregnancy, delivery and the first few days was a very poorly little girl, she came along 3 days after my dad died and has been my reason to smile, definitely a touch of souls as dad went, cos I see his mischievous twinkle in her eyes, the next 2 are at university, very proud mum!! and the youngest son now 18 (has Autism) he’s amazing and still in full time education.
I now have 5 dogs, having inherited my parents 2, so it’s a madhouse!!
Health wise I have Hughes Syndrome, Lupus, fibromyalgia, hypothyroidism, asthma, high cholesterol, low vit D and allergies as well as being tested for more, keep telling the specialist “nope!!!! not having anymore 😀😀😀!!!
I’ve had clots in my legs DVTs, lungs PEs, TIAs, miscarriages and a stroke in 2012. I’m lupus anticoagulant positive APS and have been diagnosed since 2010 after seeing Professor Hughes on breakfast TV talking about Hughes Syndrome and begging my Gp to test me, unsurprisingly it was positive, being pushy and determined to get answers with support from others on here was and has been invaluable.
I inject myself with a treatment dose of enoxaparin (heparin) every day, I’m not a candidate for the new anticoagulants as I’ve had arterial clots and my inr (if on warfarin would need to be 3-4). My inr was very unstable on warfarin so it was felt heparin injections would be the safer option. I also take a variety of other medication to treat all the above. Yep, I rattle, shake and roll sometimes too 😂😂😂
Take care all, big gentle hugs xxx 😀😀😀😀😀