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Scleroderma Canada

41 King William St., Suite 203
Hamilton, Ontario L8R 1A2
Toll Free 1-866-279-0632
info@scleroderma.ca

www.scleroderma,ca

Scleroderma-Society-Canada-Societe-Canad

LIKE A ROCK

Think back. How much did you know about scleroderma before you had to know about scleroderma? For most of us, the answer was: “Nothing.” With other subjects — hockey, politics, movies or cancer, for example — we know quite a bit without even trying. Those subjects and others appear on the front page of newspapers, online or in conversation. If you pay attention, it’s easy to become a bit of an expert, but even if you don’t, you understand the basics. Donna Blair-Lawton and her husband, Russell, have experienced a turbulent several years since their daughter Bronwyn’s discovery.

 

She was just 31 when Bronwyn was diagnosed with scleroderma, despite experiencing symptoms beginning in her teenage years.

 

Initially she suffered from calcium deposits, hard skin, and digital ulcers. Bronwyn was eventually diagnosed when she went to the hospital to have an ulcer removed, believing it to be infected. After being put on IV antibiotics, an infection specialist visited her and determined the ulcer wasn’t infected and identified her disease as scleroderma.


“It all feels so surreal,” says Donna, as she describes the shock of the diagnosis. “It was an ordinary day like today. Then all of a sudden … crisis.”

In November 2017, Bronwyn’s condition worsened. She visited a doctor where an endoscopy discovered she had Gastric Antral Vascular Ectasia (GAVE), otherwise known as “watermelon stomach,” in which the blood vessels lining the stomach become fragile and prone to rupture.


After frequent hospital visits, she was diagnosed with Pulmonary Arterial Hypertension (PAH) and, fortunately, found a doctor in Manitoba specializing in its treatment. To monitor her progress, the doctor saw Bronwyn every three months until a large calcinosis on her foot prevented her from completing the walking test.


On one of her most recent visits, Bronwyn’s heart was beating abnormally. Upon examination, the doctor found fluid around her heart and lungs, and Bronwyn remained intubated in the ICU for over a week. She was moved to a nearby health sciences centre’s respiratory ward where she was diagnosed with Pulmonary Veno-Occlusive Disease (PVOD). This is extremely difficult to identify and is often only found
upon autopsy.


The best way Bronwyn can describe her experience to her parents is that her “body thinks she has broken bones and sends calcium to repair them.” The calcinosis causes Bronwyn a lot of exhaustion, as well as pain, particularly where it comes out of her skin.


At first, Bronwyn was able to keep her job. The effects of scleroderma were more on her extremities so, while she had difficulty typing, her employer was accommodating. When she had the PAH diagnosis, however, she was forced to stop working, facing extreme fatigue.

Doctors first treated Bronwyn with medication through a central line, though this caused decreased blood pressure and poor breathing. It was because of the effects of this particular medication that she was then diagnosed with PVOD. It was at this time that Bronwyn and her family then learned about the drug Uptravi (selexipag) to treat PAH. While this medication is approved by Health Canada, it is not included in
any province’s drug benefits.

Sadly, Uptravi will not be able to help Bronwyn. While helpful for those diagnosed with PAH, it will not help her PVOD condition. Still, she has been active in Manitoba and sent letters to members of governmentand organizations to lobby for the accessibility of the medication.

The only option to ease Bronwyn’s suffering is a lung transplant, unfortunately not available in Manitoba. She and her family are in the process of applying for, and awaiting decision, to see if she can receive this transplant in Alberta. A new set of lungs would give Bronwyn the opportunity to breathe again — a life-altering change. She would have more energy, better constitution, and overall improved quality of life.


Though not currently part of any support group for PVOD, Bronwyn was once the president of a scleroderma support group until her declining health forced her to step down. In spite of this, she has found great
support for her and her family with the healthcare staff she sees daily. Facing health care cuts from the provincial government, the nurses and doctors remain pleasant and consistently helpful. As Bronwyn stays in hospital while waiting for news on the transplant, this makes all the difference.


Throughout this ordeal, Bronwyn has remained strong. Donna believes her daughter is the glue that holds them together, so to speak. “She has been absolutely stellar. She is so courageous and brave and taking it all in stride,” says Donna. “She is what centres us. Without her, we couldn’t have made it through this.” Bronwyn’s family appreciates the support it received from Anna McCusker and Scleroderma Canada. “They helped to put Bronwyn in touch with the right people, valuable resources, and excellent doctors.”

NOTHING MORE VALUABLE THAN MEMORIES OF THOSE WE LOVE

By Jennifer Moad

There is nothing that delighted my mother more than her family and she was happiest when we were all together.


The joy she took in loving her family was infectious and her laughter warmed our hearts. She was insightful, remarkably perceptive, and always listened with an open heart.


Without question, my mom was the center of our family — she organized all of us with ease, finding ways to bring us together despite the busyness of life. Even when she was diagnosed with the life-altering disease of scleroderma, and subsequently two different kinds of cancer, her positivity and love for meaningful connections with those around her never faltered.


The blue ribbon from the Scleroderma Canada magazine is pinned to our monthly calendar on our fridge as a reminder of my mom’s positivity. No matter how busy life gets with our family’s activities — work or whatever else comes our way — there is nothing more valuable than the memories we make with the people we love.


The blue ribbon reminds us all to appreciate those around us and to lean on the gift that comes with every day.

HANGING A BLUE RIBBON IN SPIRIT OF THE HOLIDAY SEASON

By Jenny Forrest

Family was paramount in my dad’s life.


He always made the effort, as well as created the time, to be with the ones he loved. He loved entertaining — whether hosting barbecues, surprise parties or just little get-togethers on the deck.


He was a happy, healthy man who very seldom became ill; even if he caught a cold, you would never hear a word of complaint. He always had a positive outlook on life, even when faced with the diagnosis and ensuing life-threatening battle with scleroderma.


The holidays meant a lot to my dad, and he made sure we always celebrated together, as a family. Christmas was his number one favourite holiday. The tree was always decorated by the end of November. If he wasn’t putting the finishing touches on the outdoor display, you could often find him — Chef Petey — in the kitchen putting his exemplary culinary skills to the test with the sounds of Frank Sinatra playing in
the background.


And although it has been nearly eight years since he passed away, the Christmas season is still especially difficult. But we have a few special ornaments on our tree each year which represent our dad and help us keep the traditions and spirit of Christmas alive.


When we received the blue ribbon last year in the Scleroderma Canada magazine, we felt it was appropriate to add it to our special ornament collection. We hung it with mixed emotions, but knew it was meant to be a part of our holiday. We will hang this ribbon every year in honour of our dad and those suffering from this disease, those who have been taken from this disease, and those who are supporters eager to raise awareness.


We definitely had the most loving and truly outstanding dad. Any man can be a father, but it takes a special one to be a dad and that was, and will always be, our dad.