Personal Stories

Read the real life stories of people living with Scleroderma.

Kristina’s Story About Her Grandmother

Kristina lost her grandmother less than three months ago after she suffered with scleroderma for over 50 years, to read her story here.

Sandra’s Story

Sandra George was also kind enough to share her courageous story with us about her experience living with Scleroderma. Sandra included her story in a pamphlet that she created which also includes information about food, pain relief, medication and physical challenges for those with Scleroderma. Sandra's pamphlet can be found here.

Paige’s Story

Hi, my name is Paige. When I was 14 years old my mother was diagnosed with Scleroderma. I'm not really sure if my story would count, because I, myself do not have Scleroderma but I felt it would be nice to hear from a different point of view. Read more

Linda’s Story

Linda Roach was a nurse for thirty-five years. Even when scleroderma starting taking over her life she still managed to put others first. To read more of her story click here or if you would like to contribute to Canada Helps please follow this link.

Ada's Story

My name is Ada, I am 53 years old and I am married for 33 years to a wonderful man who always was beside me and gave me hope and reason to fight no matter how bad I felt. Read More.

Barbara's Story

I have been living with scleroderma for 6 ½ years and this is my story.

Up until the fall of 2004 I had been a healthy, active person. I had an exciting and demanding career in the pharmaceutical industry, my children had grown and were on their own, and I was active in my local community. I travelled and enjoyed many hobbies. Becoming ill with a rare disease was something that I had never considered. My grandmother was still going strong, living in her own home at the age of 101 and I assumed I’d follow in her footsteps. Read More.

Colby's Story

My son Colby was diagnosed with Linear Scleroderma last year at the age of 3. He was a VERY active little guy and never had any health problems. Colby was outside playing one day and started complaining that his foot hurt, so we took him to the local hospital. Read More.

Isabel’s Story

Isabel has always relied on her hard-working hands, making a living by cleaning homes in the city. So when her hands started to swell and become painful, Isabel wasn’t overly surprised and simply thought she was developing arthritis, or perhaps retaining water. Read More.

Joseph’s Story

Joseph is a family man, born and raised in Hamilton. With a wife and three children, he has always prided himself on being able to provide for his family. So in January 2004, when pain and tightness in his hands and forearms began to affect his ability to perform his physically demanding job, Joe was worried. Read More.

Janice’s Story

To receive the diagnosis of Scleroderma, an incurable rare auto-immune disease, is life-changing.  My diagnosis occurred four years ago and it was the ‘worst’ and ‘best’ thing that could have happened to me.  I was forced to re-invent myself, to change the role which had once defined me and draw from my inner strengths. My husband, Bryan, has always provided that external strength.......his unwavering support and unconditional love inspired me to find the courage to take control of the disease.  That change in my life’s path allowed me to re-evaluate life’s priorities; it brought everything truly into focus; and allowed newly found strengths and creativities in me to surface.

I recall vividly walking into that first Scleroderma support group meeting 3 years ago so nervous and afraid of public speaking; today I am that group’s Chairperson.  Dealing with life’s challenges is a continual ‘journey’ involving self-perseverance; it involves sometimes taking 2 steps forward and one step backwards.  What I have learned most importantly is making the most of those ‘good days’; embrace and cherish those times because those memories created will fuel your inner strength.  Last year for my 50th birthday celebration we crossed off a ‘bucket list’ dream of ours and vacationed in Costa Rica.

Celebrating this milestone birthday zip lining through the magnificent rain forest tree accomplishment reiterating to myself that your attitude truly does determine your altitude in life.  For everything this disease has taken, something with greater value has been given back to me.

“Life isn’t about waiting for the storm to pass; it’s about learning to dance in the rain”

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