Losing Control of Your Limbs and Learning to Regain your Quality of Life
“The doctor said I might never walk again, but I said, you know what? Watch me. I’ll be dancing.”
Did you know about one out of every 100 adult Canadians lives with Rheumatoid Arthritis (RA)? That’s about 300,000 Canadians.
RA is stealthy, complex and unpredictable. An inflammatory disease that strikes joints and tissues, it can cause pain and disability — sometimes with little warning. What’s more, anyone can get RA and at any age, and it affects women two to three times more often than men. There is no cure.
Life for RA sufferers, and those who suffer from other bone and joint conditions, can be a challenge. But inherent in nearly all challenges are opportunities for growth, transformation and the potential to develop real solutions.
To this end, the Alberta Bone and Joint Institute is developing MAP to MOTION, a central hub that will capture bone and joint healthcare data provided by medical professionals across Alberta. This data will be gathered, analyzed and used to help develop more personalized treatment plans for the overall wellbeing of patients so they can live their fullest lives.
Paula
Kostecki is a perfect example of someone who would benefit from this
initiative.
Learning a new reality
RA can be a nerve-racking diagnosis. Imagine a life where every movement causes
pain and even a simple task — such as getting out of the bed — can take
hours. This, unfortunately, was the reality Paula Kostecki lived with for nearly
30 years.
At the
tender age of 20, Paula’s journey began with unexpected pain in her wrists,
knees and hands. As someone living a healthy lifestyle with plenty of activity,
for a couple of months Paula wrote off the pains as something else — growing pains, stress or maybe an injury?
Unfortunately, the pain got much worse and she eventually sought her doctor for help. A round of exams and blood work resulted in the devastating prognosis: Paula had Rheumatoid Arthritis. And it was going to get worse before it got better.
By the time she saw a doctor, Paula’s symptoms included:
- Extreme pain from her jaws to her toes
- Inability to move without pain
- Extreme fatigue
With support from her health team, Paula tried a variety of treatments and drugs to help her condition, but nothing worked. Not one to give up, Paula kept going, trying to maintain as normal a life as she could. Eventually, her condition worsened and led to multiple joint replacements, including:
- Seven hip replacements
- Three knees replacements
- Reconstruction in both feet
- Shoulder replacements
- Replacements in all fingers
- Both wrists
- An ankle replacement
“You didn’t have any control. It controlled you.”
Light on the horizon
Despite the challenges, Paula never gave up. She managed to adjust to a life of unknowns. “You never knew when it was going to attack again and when you couldn’t work,” she recalls. Despite it all, Paula continued to be optimistic and open minded, trying new treatments and drugs.
Finally, in 2001, Paula’s Rheumatologist specialist suggested a brand new treatment that could work. An injection that Paula could give herself once a week, the treatment completely changed her life. Within a month, her energy levels spiked, she regained mobility and her pain was under control. After such a long time, she could hardly believe it. She’s been on the drug for 20 years and has been in remission since then.
Paula found a treatment that worked for her. MAP to MOTION will support RA patients like Paula by giving researchers and healthcare professionals the ability to explore bone and joint health as never before done. By connecting a patient’s healthcare experience and asking new questions about patient health, Albertans will be set to discover innovative treatments and ways of managing bone and joint health conditions.
Today, 28 years later, Paula lives a relatively normal life and can even squeeze in a dance or two when the occasion calls for it.
Her advice for patients living with arthritis?
- Remember how lucky we are to have the knowledge and advancements of modern medicine!
- Today, an RA diagnosis doesn’t mean you’ll live with deformities, and you may not need all the replacement.
- You can live a normal life. It’s not as debilitating as it used to be.
MAP to MOTION
There is a significant information gap about bone and joint health in Alberta; MAP to MOTION is our chance to fill this gap. With support from our partners, MAP to MOTION will link information from all the different bone and joint services that Albertan patients need, acting as a central hub of data for bone and joint knowledge. By capturing and analyzing the data, healthcare providers can develop more personalized, more effective treatment plans that support the overall wellbeing of patients like Paula.
The first of its kind in the world, MAP to MOTION partners with researchers to provide clear and comprehensive information to healthcare providers as they work to create innovative solutions to improved bone and joint patient care.