Hi all! Welcome to our lovely site, I hope you gain something from your visit here today, and come back soon. We’re a lovely team of people on here! And so you can get to know us a little here’s a little about ourselves…
Sue (posting as ‘Sue n Still’s')
I’m Sue, I was officially diagnosed only 6 years ago after being mis-diagnosed 12 years ago, so it’s been a long and bumpy ride! Unfortunately my AOSD is described as severe refractory – meaning it’s not responding to treatment and and has affected me to such an extent that I’m now a power chair user constantly following some years combing crutches and a manual chair. But my Professor is fab, so I’m ever hopeful that we’ll find something to help, at the moment we are looking into experimental medications to see if I can be accepted on to a trial in the future. Fingers crossed… For now I have Tocilizumab infusions every 2 weeks, 1000mg IV Methylprednisolone every 4 weeks and 30mg daily prednisolone, and I’m about to add Ciclosporin to the mix too. Along with all the pain Meds (fentanyl for me as the primary one), anti-emetics and osteoporosis iv’s and tablets
On a personal level, I’m the mother of two lovely boys aged 11 and 10, I also have the support of James, my hubby and not forgetting my very very clever trainee assistance dog Rolo and his not so clever but equally cute mum Fudge . Before AOSD I was a Secondary school and Sixth form teacher and also in the early mis-diagnosed years I worked part-time as a BSL interpreter and translator and I later had a year running my own business for 2 mornings a week, then it all kicked off too much.
Now I’m doing this instead, and loving it! xox
Cory (posting as ‘Veggies R Cool’)
Hi everybody, I am Cory, I am 11 years old and Sue’s son. I’ve grew up with my mum having stills and can’t remember anything different. She has had stills all my life, however she was only diagnosed when I started school. Me and my younger brother where born very prematurely and the cause only became clear when she was diagnosed.
Having a parent with AOSD is not always fun however because I can not remember anything different I have nothing to compare with. Because of my mum’s illness I am a member of Young Carers a charity run by Barnardos who arrange get-togethers with other young carers in the area.
Ruth (posting as ‘ruthieuk’)
Hi everyone, I am Ruth, 44 and was diagnosed with AOSD when my youngest was 3 months old after I had a throat infection that wouldn’t go away. I am lucky in that I was diagnosed very early on, but the rash and joint swelling was all I had to start with. Having had an hysterectomy 5 years ago it seems to have kicked it into life properly and I had regular hot stints in the day, more pain and severe tiredness. I was lucky to trial Tocilizumab a few years ago before it was licensed and its been a great help to me. No rash at all since onset of the infusions and temperature not as regular. I have this every three weeks and in conjunction with Methotrexate 10g weekly, and Predisnalone 11g daily, I manage from flare to flare. Slow release morphine is what I use to help with the pain.
My saving grace is my two beautiful daughters age 13 and 11 who care for me in an amazing selfless way. Its not easy being a single mum when poorly, but they make it as easy as possible and we have lots of fun together crafting. I used to run my own Scrapbooking website and workshops for 5 years, but it became too much and I had to sell the business a year ago. Having said that you will normally find me in my recliner in the day either watching some crime drama, or sat at my dining room table making cards, scrapbooking or making jewellery which is my latest passion.
I am so excited to find fellow stilligans on here and to be able to share our stories and help each other battle this wild and wacky disease!! xx