I have a disease that affects twice as many women than men. The average age of diagnosis is 35. It affects everyone. It affects students, teachers, business professionals, politicians and preachers. Its a disease that doesn’t discriminate and affects everyone from everypath of life. It affects my daily life in unimaginable ways. It affects my family, friends and loved ones.
I’d give anything to have what I once had. I was once a very active young woman with a great job, with many hobbies but most of all a great love for dancing. Today I deal with stiff, painful joints and walk with the help of crutches and in a way I’m reminded of a line said by a friend to me in a Ed Sheeran song “When your legs don’t work when like they used to before” is very fitting to my situation.
When I wake I deal with morning stiffness that can last a few hours. When it’s been at its worst it has lasted most of the day. I miss having the freedom in my body to move freely, I miss making spur of the moment decisions and doing everyday things other people take for granted.
Things you take for granted like jumping out of bed first thing in the morning, taking care of personal needs, walking for miles, doing household chores, wearing nice high-heels, carrying a shoulder bag, putting on mascara, doing your nails, doing zips and buttons, opening jars and cartons, fastening bracelets and jewellery. And many many more things.
People in Mayo currently have to travel to Merlin Park Hospital in Galway or Materhamilton in Leitrim for consultation and treatment services. That means I have to travel for over 5 hours to get to be seen. That’s not factoring in waiting to be seen by the consultant or other members of the team. Basically it’s a whole day gone. You are absolutely wrecked after a day to the hospital. There has been times I’ve had to do this journey 3 times in a week.
I wish for nothing more than others not to have to suffer like I have in pain, on a waiting list, waiting for a diagnosis and a treatment plan because the current waiting time is over 2 years in Ireland as we have the lowest rate of Rheumatologists in Europe. With early dignosis and treatment within a 3-6 month window this ensures the best chance of remission within the first year in comparison to 30% people dignosed will be left with a permanent disability after 3 years. I wish for others not having to travel for 2-3 hours each way to see a consultant rheumatologist and get infusion treatment. But I really live in hope for a cure for this horrible incurable disease that is ruining the lives of the young people of our society. The lives of you and me. I am Stacey and I’m an Arthritis Champion. Please join me in the fight for faster access to dignosis and treatment to prevent disability. Become a champion. Do it for you, do it for your family, do it for your friends because tomorrow it maybe you or them that joins the 1 in 5 people suffering with Arthritis in Ireland waiting to be seen in pain.
Have you been waiting a long time to see a specialist in the public system? Please tell us your story. Email firstname.lastname@example.org