Select a name below to read about the experiences of patients and caregivers.
I got married in 1969, went to University of Manitoba and, in 1973, my husband and I began teaching in Prawda, MB. I quit teaching seven years later to raise two kids but, while they were growing up, I continued to substitute in schools in Steinbach and area. Eventually, I went back to teaching full-time and loved every minute of it. What fun it was!
During those years, I had several issues with my fingers. A small black spot developed on one of them. I thought it was a sliver so I poked at it with a needle. It was bugging me so much that I had it checked by a doctor, who gave me antibiotics to heal what was diagnosed as an infection. From pills to IV treatment, it did not heal. There was talk of removing it, but eventually it did heal. Then all my fingers began to turn white and Dr. Grobler diagnosed Raynaud’s. In 1997, a blood test revealed the diagnosis of scleroderma: CREST and Systemic. I told Dr. Grobler that I was glad my diagnosis was not the “C” word. He replied that this “S” word was not any better. Since then, I’ve had trouble with digital ulcers, heartburn, esophagus, heart, stomach and bowel issues. The doc said that my life expectancy was no more than fifteen years. That was over twenty years ago. Since then, I’ve managed to do most of the things I want in spite of scleroderma. I am very stubborn and determined! I even kept on sewing and gardening! I wore out lots of gloves and mittens!
In 2007, scleroderma caused the end of my teaching career. My doctor had been trying to convince me to stop teaching for several years, but I had not listened to him. When one of my Grade 2 kids told me, “You have to listen to your doctor!”, eventually I did. I’ve had extensive problems with finger ulcers, toe and foot ulcers and all of the other usual scleroderma stuff. Amazingly, I’ve had only one finger shortened due to scleroderma. For over a year, three ulcers on my foot kept me confined to a little red scooter. I quickly learned how to take it apart to put it in the car trunk. Then, in November 2009, my life came crashing to a halt as I suffered a major heart attack and cardiac arrest. Thankfully, doctors in Steinbach and Winnipeg saved my life. I became a real, live, walking miracle! Were these issues related to scleroderma? No one really knows.
During the late 1990’s I searched the internet about scleroderma and that’s how I became part of the Canadian Scleroderma Registry and found Dr. Robinson, my rheumatologist. His name was listed at the end of a medical article and it said he was practicing in Winnipeg! I found him and he took me on as his patient. So good!
When I was first diagnosed, I attended a few scleroderma meetings in Winnipeg but… when I looked at the people attending the meetings I quit going. I was too depressed with what I saw. I thought it was all going to happen to me!
What changed my mind is that for several years, I’ve been involved in the Relay for Life Cancer Walk. When I saw the support that cancer patients, survivors and their families receive, I became very jealous! Why them and not me and others who have scleroderma? I decided to try and change this – for me and for all of the others affected by this disease. The main reasons I became involved with Scleroderma Manitoba are that I want to do my part, help others who have scleroderma, and change how I feel about the disease. So I volunteer on the Board of Scleroderma Manitoba as my way of helping others who are dealing with this disease.
I can live with scleroderma because I have faith in God for help and care along my life’s journey. And I have amazing support and love from my family and friends. They are always there for me, no questions asked! I will turn 70 this summer and have had scleroderma for too long to be eligible for the newer procedures. But if my diagnosis can help someone else, I’m all for it! Research and patient studies are how we can beat this disease.
For the past several winters, my husband and I have followed what some scleroderma pamphlets tell you to do – “move to a warm climate!” For the last ten years, we have been spending the winter months in Mesa, AZ living in Good Life RV Resort. And my identical twin sister and her husband live right beside us. Yes! Susan also has scleroderma. Our health is so much better when we are in a warmer climate! And it really IS the Good Life! When I go to Dr. Robinson for my check-ups, he often says to me: “If I could, I would write you a prescription to go to Arizona!”
Thank you for reading my story. Feel free to contact me at firstname.lastname@example.org or by phone (204) 326-3918.
My personal story starts with a cold winter night at work thinking I had gotten frostbite on my hands after being in the cold. I did not think it was that cold but my hands were blue. I went to a doctor who told me I had Raynaud’s and to try and keep my hands warm. At that time, in 1989, I was a Winnipeg Transit bus driver so being in the cold was something I did every day. In 1992 I noticed two things. First, I was going through a roll of Tums a day and later found out I had bad reflux.
In January 1992, I had day surgery done on my knee and, as I was waking up, the anesthesiologist was trying to explain he thought that I had scleroderma in my esophagus and I should see a rheumatologist. It took me nine months to get in see the specialist. The second symptom was my hands. They started curving inward making gripping things clumsy. In November of 1992, with the Raynaud’s worsening, my hands also worsened. So in discussing things over with family I took time off work.
Within the next eight months I got even worse and could not return back to driving bus, a job I really enjoyed. I was asked to go indoors and answer information phones for transit which was another job I enjoyed and kept doing on a part time basis for six years. During that time, my rheumatologist put me on penicillamine, which seemed to improve my condition. I was on penicillamine for nine years. I was enjoying the information phones until my reflux started to affect my voice. I would lose my voice in the middle of a conversation. So now I am happy being at home with my dog, three cats and, of course, my husband. My daughter lives close by, so I get to see and play with my two grandchildren often.
Also in 1992, I met a lovely lady by the name of Harriet Carter who was brave enough to invite Scleroderma patients into her home and start the first support group, which has continued to this day. In 2001 I was contacted by a wonderful group of people in Calgary and was invited to attend a meeting that would be the first meeting of the Scleroderma Society of Canada. We had people from B.C., Saskatchewan, Manitoba, Ontario and Alberta. Every two years since then, the Scleroderma Society hosts a conference in a different province. Winnipeg has hosted this event twice, in 2003 and in 2009.
An informal caregiver’s perspective
Many people are familiar with the “Hard word. Harder disease.” slogan. It’s true the disease is difficult to manage and to endure. In 1993, I was exposed to the word for the first time. I was 17 and there was not a lot of information available at the time. I was not the person who was diagnosed with the disease – my mother was. I was angry and any time someone asked me about it I would respond rather harshly with, “It’s a rare disease and if it gets into her heart or lungs she will die.” At the time that is what I knew and thought about scleroderma.
Since then, we have been fortunate enough to grow along with the efforts of many to provide more information, support, more resources, awareness and research. I fear the things that have not developed are the resources and awareness for the support team of a scleroderma patient. Like with any disease, the person most affected is the patient. They are the one who suffers the pain, discomfort and fear of the progression, of the unknown. However, the disease ripples out and affects the surrounding people who are at the ready to provide support, understanding and love.
As care providers, we can accompany patients to appointments. Most doctors and specialists welcome this, as it allows for an extra set of ears to hear the diagnoses, the next steps, the explanations. It allows for questions to be asked that, at the time, a patient may not think to ask. It allows for the caregiver to understand and ask their own questions. I would encourage all support people to advocate for this. Many patients are stubborn and independent and I applaud strong people. The thing to consider is that in patients being strong, they are not allowing the people around them who are watching the effects and the progression to find the answers and to prevent the fear from taking centre stage.
The Scleroderma Manitoba association hosts support group meetings; they attend seminars, conferences and provide information booths at certain events, host educational days. These are not just for the patients; caregivers, providers, family, friends, anyone who is part of a support system should participate in some of these. It provides insight and understanding, and a comforting awareness that you’re not alone, you are not the only one dealing with a hard situation.
In the 26 years that my mom has lived with scleroderma, I have seen the change. I have seen her struggle. I used to fear it; I used to be angry about it. If I am honest with myself I still am, but I have also seen the strength and resilience not only in her, but in the many other patients I have met over the years. I have been forceful in my participation and I have been able to gain a more accurate picture of the obstacles. I have been able to provide a support that she needs and will continue to pull from.
Don’t sit back and wait for the answers on how to help the people you care for. Find the answers and be a strong support. It helps patients heal and it allows caregivers to thrive.