Dolorès Dupuis has had diffuse scleroderma for over 20 years. She has been actively involved for all that time within the scleroderma patients support community, to help people who, like her, have this incurable disease.
I remember, it was September 16, 1998. My doctor called me and told me to leave my office. The diagnosis is received. I have a disease called scleroderma and I have the diffuse form, meaning the possibility that my internal organs might be affected: rny œsophagus, my heart, my lungs and my kidneys.
Within less than a year, my autonomy is limited to holding a plastic cup with both hands to drink and a fork to eat. I can’t wait to finish my meal because chewing requires much efforts. The disease evolves this way for a two-year period and when it starts to abate, it does so for as long a period of time.
Today, some hand limitations remain, as well as some stiffness in the joints. When I look back, I appreciate all the little pleasures that life gives me a lot more than before.
Read Dolorès’ story in Le Nouvelliste Vivre avec la maladie qui momifie. (French only)
Happiness is in the small things!
You may know the following quote: “Happiness is made of little things.” When we have a degenerative disease, that phrase makes even more sense in our minds. Since I was diagnosed with scleroderma, it’s like I feel an urgency to live. The daily gestures that have become so difficult to perform remind me of the importance of living fully, intensely.
I may be sick, but I want to live! And nothing makes me more alive than when I laugh, when I share moments with family and friends. These small daily pleasures allows me to shake off pain. They remind me of who I am and who I have always been: an optimistic person who fears no challenge… almost. It would be wrong to say that I am not afraid, since the unknown is often scary. It would be wrong to say that I don’t experience frustration when I have trouble doing my business, since it’s frustrating to be reduced to helplessness. But after that, there are two choices: not to hope for anything in life or to realize that happiness is made of small things. The disease has brought me many bad feelings, but it makes me know a part of me that I did not know existed. I’m a lot stronger than I thought.
To a certain extent, I choose my condition. I decided to draw strength from within, to take every happiness that passes, to marvel at a sunset or the noise that the wind makes. We have to enjoy every moment of life, because we don’t know what tomorrow will be. And the tomorrow I wish for is a tomorrow without scleroderma.
I have had scleroderma since June 2018. But for the past ten years, I was wondering what was wrong with me healthwise. I am a professional translator, cook and, for the past five years, grower of organic culinary lavender. Agriculture, small fragrant blue flowers, bees, the tides, agrotourism, my children are grown so, full sun responsibly since 2016.
The disease settled down quietly on one leg which became red “mottled-like”, to eventually spread to my thigh. In 2009, I showed it to my family doctor who didn’t know what it was. So I said, never mind, I won’t be wearing shorts in summer. No problem.
In 2018, I joined a local Christmas Market here in Baie-Saint-Paul. My forehead was horribly itchy and I had a burning sensation. The plaque went from my forehead to my brow, and the following week it reached one eyelid, which became swollen and closed. Very pretty for a public market and my wrist and forearm, had linear plaques. Plus, I was always sick ‒ one bout of flu after another ‒ we try this for the forehead, that for the wrist, antibiotics for my cough. Nothing worked. Read more.
My name is Geneviève Guillot and I have had scleroderma for 14 years. Scleroderma comes with its load of challenges. I live with persistent fatigue, and feel pain in the joints of several parts of my body. I am not always able to perform daily tasks when necessary. I can’t compare the way I am now with the way I was before the disease, but look at all I am still able to do. And try to push my limits,
To live with scleroderma is to live in the present moment, to appreciate every little piece of happiness that life brings my way.
Ever since childhood, my hands and feet were always freezing. As I aged, it got worse and worse and, following in-depth exams by Dr. Meunier, now retired, he said I have severe Raynaud’s phenomenon.
Following this, I had more and more asid reflux and, then again, Dr. Duranceau, my gastroenterologist, also now retired, confirmed my œsophagus and sphincter completely paralyzed. I have to slee on a motorized bed to avoid the reflux. Dr. Duranceau told me: “My dear lady, with everytthing you have, it’s worse than cancer. Enjoy what you can, because as tie goes on you will be forced to eat mashed or pureed food.
Scleroderma damaged my lungs, my heart started to harden, severe Raynaud’s caused the amputation of my right middle finger, which has become too painful. I am waiting for the operation. Right now, I am treated by an internist, Dr. Frantz Perpignan. My health has deteriorated to the point that I have to walk with a cane and have a panoply of medications for pain, acid reflux, etc. I had never spoken about this to Scleroderma Quebec before, even though I attended a meeting at Place Bonaventure.
I received the scleroderma diagnosis when I was 49 years old, and I am now 55. Scléroderma Quebec has given me the opportunity to be in contact with several other people affected by this disease.
On the day I realized that a team of doctors and researchers were working together to find new treatments, I was tremendously relieved. I was less scared and I felt less alone to ace this disease and more confident about the future.
I am 63 years old. I was diagnosed when I was 33. “You are allergic to yourself, so to speak”, said my immunologist, Dr. Peter Small, at the Montreal Jewish General Hospital. I loved giving blood two or three times a year, but had to stop when the celiac disease and scleroderma disagnoses were given within two years of each other. There two auto-immune diseases are related, said Dr. Small.
In the beginning, scleroderma manifested itself on my legs, below the knees, where there is still, in my opinion, a map of the Americas. When it started, it looked like a bright red outline, then it faded with, among other things, home clay treatments, but the map of the Americas remains. Then came the numbness of the toes of one of my feet, then the other, for which I received deep massage treatments. For a few years, I had numerous crises when my fingers would turn as white as snow, my joints deep purple, and I immediately put them under hot water and relax to get back to normal. Stress, more than the cold, was the cause. Thankfully, these Raynaud’s phenomenon crises are now behind me. For the past two years, swelling and stiffness has started again in my legs and, more recently, I developed sporadic, intense itching under my chin, at the to of my chest, at the bottom of my back and the crook of my knees. This is where I am at now.
I watch my health and my well-being with conscious management of stress (I distance myself from stress sources in my life, it is essential), a healthy diet, daily exercise (crucial for me, i take walks and play croquet!), good natural care, including massages as often as possible, and a good medical follow-up.
Scleroderma Quebec helps me by being my homeport, providing attentive listening, good advice and the opportunity to share with other women and men fighting this mysterious condition.
Marie F. Bolduc
The diagnosis came as a shock… Our little three-year-old Alexandra suffers from a disease that I didn’t even know existed before, bilateral linear scleroderma. Those who have suffered great hardships in their life will certainly relate to the difficult time I’m going through.
Along with the numerous heart-searching questions and concerns, ever so slowly the anxiety has started to set in and find its way into my life, my days and even some of my nights…
As I get worn out from multiple medical appointments, countless tests, and endless meetings with a variety of specialists and other specialty healthcare professionals, I experience a roller coaster of mixed emotions, torn between hope and despair. I feel as if I am running a marathon without even knowing where the finish line is and what awaits me at the end of this journey… And in what condition I’ll be when I finally reach the finish line. And what if there has never been, nor will there ever be a finish line?
The bilateral linear scleroderma of my little girl has become the primary focus of my life, but increasingly I realize that I’m way out of my depth. It’s also because I have to be there for my two other angels, Samuel Jack, her twin, and Jacob, 17-year-old, her big brother, as well as my spouse and father of my children. So, I need to pull myself together, find the energy to bring out the fighter in me and face the challenge ahead. I will fight for my little Alexandra.
I try to take stock of the situation, assess the positive and the negative in this life’s journey. Alexandra’s spirit, her thirst for life, her playfulness, her resilience, give me a lesson in life, a shining example of courage and inspiration! All this despite intravenous therapy, subcutaneous injections, medications, occupational therapy, episodic pain due to scleroderma per se, and visible, sensitive band-like indurated skin lesions on her little body. Yes, she will sometimes feel irritated, express her disagreement, have insomnia; still, over the coming weeks, she too will, ever so gently, learn to tame the “beast” and discover the resilience and inner strength that lie within all of us and can be called upon even in the toughest of times. I’m also sure that the struggle will make her stronger and better prepared for life’s difficulties. My little champion is fighting, and I’ll be right at her side, supporting and looking out for her.
I shall conclude by saying that through this personal hardship that life has thrown at me, I never lose sight for a moment that my daughter’s scleroderma is highly treatable, and that through cutting-edge research and care provided by highly specialised and dedicated medical specialists and nursing personnel, we benefit from the most advance medical treatments available. Thus, I am confident that as time goes on, Alexandra and all children with scleroderma may look forward to a brighter future! At least, that’s my fondest wish.
I am now 31 years old, I received a diagnosis of limited systemic scleroderma in 2016, when I was 27. I started asking myself some questions, because my symptoms started one year before the diagnosis. After several appointments, tests, visits with different specialists, the diagnosis finally came. Now well surrounded by my medical team, namely my internist, Dr. Maxime Labelle in Outaouais, and my rheumatologist, Dr. Geneviève Gyger at the Montreal jewish general hospital, I feel I am in good hands.
In my case, my hands are greatly affected by scleroderma, reducing my motor skills and my dexterity. A mix of joint pain, fatigue and stiffness are now part of my life. In order to improve the quality of my daily life, I chose to include a healthy diet, physical activity and several complementary approaches, such as kinesitherapy. When we are affected by a degenerative disease, our well-being is crucial. My mother told me one day “Don’t let scleroderma control you, you are the one who control your body!” and I decided to apply this every day.
Each question or worry I have regarding my condition, I know I can turn to the Scleroderma Quebec foundation, it is an incredible support. The association offers good moral support, a listening ear and a variety of advice that can help us, but also help those around us. I feel well surrounded, because I can share with other people affected by scleroderma. It is like being in a big warm home.