Patient Stories - Why Research Matters

 

Women live longer, but with these diseases not necessarily better! Here is the reality of their conditions.
 
 

	Trudy never let arthritis control her life, but needless to say some days were really hard.  Simple tasks like getting out of bed and into the shower seemed impossible.  She learned at age 22 that Rheumatoid Arthritis is not just a disease of the aged.  When diagnosed, she was told it was very likely that she would be in a wheelchair within five years.  Trudy told him he obviously had confused her with someone else and left his office devastated, but prepared to prove him wrong.
	For as long as she can remember, Jennifer wanted to be a musician.  But in her mid-twenties and in the midst of completing her second music degree, everything changed.  She began to experience joint pain and debilitating fatigue and was diagnosed with severe RA.  Jennifers's flares came and went, worsening over time until both her hands and feet were severely deformed, ending her ability to play musical instruments.
	Alex and Kara are cousins with a lot in common.  Both developed RA after the birth of their third child.  They are committed to beating this disease now, so their children won't have to experience it in the future.  Alex was diagnosed with RA 8 1/2 years ago - Kara about one year later.  Two cousins, young mothers living much the same very frightening experience.
	As an undergraduate at Laurier University, Erinn played varsity soccer - reveling in the competition and athleticism.  Things changed one summer, however, when she started to feel fatigued and began experiencing joint pain, particularly after game days.  During training camp, it became clear that there was a problem.  Her morning stiffness - another new development - would last for hours, and by the early fall she had to stop playing.  Soon after, she was diagnosed with RA.  She was just 21 years old.  The onset of the disease was aggressive.
	At 20 years old, Tiziana was writing exam finals, when she developed a rash on her face, began to experience extreme fatique, had a fever and aching and swollen joints, particularly in her knees and fingers.  She saw her family doctor who referred her to a Rheumatologist who confirmed her doctor's suspicions. Tiziana was diagnosed with a severe case of Lupus and admitted into hospital and stayed there for three weeks of treatment.  Over the years, Tiziana experienced many challenges with her disease because of the many drugs she is required to take.  Since her diagnosis, Tiziana founded Dance for the Cure, an annual gala that has raised over $1.3M for research.
	Imagine getting a diagnosis by a doctor who looks like she is going to cry.  I was 22.  She handed me a paper with the words "Polyarteritis Nodosa." I had no idea what those words meant.  I now know that it is an autoimmune disease, a type of Vasculitis.  I have been fortunate to have a world-renowned rheumatologist at UHN look after me.  If it weren't for research I would not be living the life I am today but I worry about my children - especially if I have a daughter!  As it turns out, soon after I was diagnosed, my mother was diagnosed with RA. The one thing that does give me solace is funds we raise will get us closer and closer to a cure for Arthritis and autoimmune illnesses.  I have faith.