Fall Edition
THE SCLERODERMA PRESS Scleroderma Canada Newsletter
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ED Message
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2021 Virtual Walk
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Provincial Update
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Facebook Live Series Promotion
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CORD Toolkit
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SPIN-CHAT Research Update
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Meet Dr. Pope
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Patient Story: Sunika Dyall
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Caring for Loved Ones
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Upcoming Advocacy Days: AB, ON & NB
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Shop
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Family Fun
TABLE OF Contents
EXECUTIVE DIRECTOR MESSAGE
A MESSAGE FROM JOHN MALCOLMSON, EXECUTIVE DIRECTOR
I’m thrilled to be sharing another update with you, our loyal members. On behalf of Scleroderma Canada and our Board of Directors, I’d like to express our sincere gratitude for your ongoing support through a trying summer. Your commitment to the organization allows us to offering valuable resources to our patients, caregivers, and medical professionals. We could not do what we do without you, and we thank you for all that you do! Through the ongoing COVID-19 pandemic, we have remained committed to our fundraising efforts. Scleroderma Canada pivoted to adapt this year’s Walk, Run or Ride for Scleroderma event to a virtual platform and with your help, we were able to #MakeAMoveForScleroderma raising more than $250,000 for research and advocacy in the scleroderma community. This tremendous goal could not have been achieved without our incredible registrants and participants and we are grateful to each
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and every one of you! As we look to the fall, we are excited to offer a series of Advocacy Days in Alberta, Ontario and New Brunswick. Please stay tuned and follow us on Facebook, Twitter and Instagram for dates to be announced and the opportunity to share your voice, and advocate in your province. Should you or someone you know have questions or concerns as it relates to scleroderma, please don’t hesitate to contact us at 1-866-279-0632 or info@scleroderma.ca. We hope you enjoy our fall edition and look forward to staying connected throughout the rest of 2021.
John Malcolmson
NINTEDANIB Scleroderma Canada and our provincial partners are working closely with provincial government to advocate for the use and approval of Nintedanib (commonly used by patients with ILD). If you or someone you know is taking this drug, we want to hear from you, your voice matters! Please contact us to get involved at info@scleroderma.ca.
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2021 VIRTUAL WALK
We are extremely proud to share the success of our 2021 Virtual Walk, Run or Ride in the Park for Scleroderma. Our event continued to evolve this year to accommodate the ever-changing COVID-19 pandemic as we encouraged individuals to participate in one of our virtual walks in 7 provinces, across Canada. From May 17th to June 29th, over 200 participants made a move for scleroderma from the comfort of their own homes or neighbourhoods, raising funds and awareness.
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As this event continues to grow year over year, we are excited to report that close to 60 of this year’s registrants were first time participants in 2021. This growth can be partially attributed to SC’s decision to promote the campaign using www.hardword.ca, open from May 17th to July 16th, making registration easily accessible. We want to express our immense gratitude to our entire community, including the individuals who donated to this campaign. Thanks to you, we were able to raise over $250,000, well surpassing our national goal! We are overwhelmed by the teamwork and support displayed by our community.
This year we had many prizes given out to fundraising achievement draw winners and weekly photo challenge draw winners. All registrants who reached certain fundraising levels were entered into a draw to win a TimCard of varying amounts. In addition, participants were entered in a draw every week for the weekly photo challenge to win a $50 TimCard. We had seven winners throughout the seven weeks of photo challenges.
Scleroderma Canada hit record numbers across all three social media platforms for the 2021 Virtual Walk, Run or Ride Event. Due to the virtual nature of the event, we took to engaging participants online as much as possible this year. Utilizing Facebook, Twitter, and Instagram, we were able to captivate participants across the country. Overall Scleroderma Canada’s Twitter, Facebook and Instagram encompassed many campaign related tweets, photos and messages. Some of our most notable social media posts included “impact spotlights”, National Scleroderma Month introduced by Jason Alexander and John’s 50 activities for $50, 000. Impact spotlight posts were utilized to recognize the many perspectives of those affected by Scleroderma.
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MORE OF OUR NOTABLE POSTS
(Alessia Impact Spotlight: Reach of 683)
(Brandon Photo: Reach of 500)
(National Scleroderma Awareness Month: Reach of 300)
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Every year, Scleroderma Canada aims to illuminate many landmarks blue throughout the country for Scleroderma Awareness. This year, we illuminated 29 different landmarks/buildings across Canada. These illuminations included the CN Tower, The SASKTel Center, Niagara Falls, High-Level Bridge, and many more.
Thank you to our amazing volunteer walk coordinators that helped make this year’s event a huge success. We are looking forward to introducing a new hybrid style campaign in 2022, offering both in-person and virtual walks, to bring back tradition while continuing with the virtual event that has been so successful in the last two years.
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SCLERODERMA CANADA PROVINCIAL UPDATES Scleroderma Canada is honoured and privileged to have provincial support, across the country. Scleroderma Atlantic, the Scleroderma Society of Ontario, Scleroderma Association of Saskatchewan and Scleroderma Alberta are all a part of our tight nit community, bringing patients, caregivers, medical professionals, advocates, and friends together. The work that we do would not be possible without the contributions and commitment from each of these regions and we are grateful for their ongoing support. Here’s a little bit about what they’ve been up to:
SCLERODERMA ATLANTIC Now that September is here, Scleroderma Atlantic would like to let everyone know that we are busy preparing for fall with a variety of events and initiatives you can look forward to. We hope you will get involved in the ways that work best for you.
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Zoom Meetups: Scleroderma Atlantic is holding regular monthly Zoom meetups. The next one is on September 17th. It is a fun, casual, and a social way to connect with others living with scleroderma. Please join us to meet some new people or see people you haven’t had the chance to catch up with for a while. In-Person Meetups: We were so lucky and happy to have been able to hold an In-Person Meetup in August. It was great to see everyone. The next one is being held in Wolfville (location TBD) on September 25th at 11:30 am.. This is also a good way to meet people and we hope those who can will join us. These are held outside and follow all covid-19 protocols. The Run/Walk 2022 Meetings are starting this month. Please join us via Zoom to share ideas and learn how you can participate. The first meeting is September 15th at 6:30pm. We will be sharing a link on our social media and in our newsletter. Hope to see you there! The Scleroderma Atlantic AGM: The annual AGM is approaching soon. Please join us on Sunday October 24th at 2PM AST to learn more about the many projects Scleroderma Atlantic took part in over the past year. Educational Initiatives: Educational Resource Update: Have you had a chance to view our new CREST Video yet? You can take a look here: https://www.youtube.com/watch?v=dKE3DsZ5E0g The Scleroderma Atlantic Webinar Series: The Webinar Series is being planned and scheduled now. The first fall webinar will be held on October the 17th. Watch for registration links soon in our social media and Newsletter. Topics and details to follow.
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SCLERODERMA ONTARIO With the support of our loyal members and donors, the SSO has enjoyed a successful summer. Our June Awareness efforts helped raise more than $185,000. Special thanks to the Turkstra, Civiero & Sauvé families for their generous support in helping us reach this goal. We also raised more than $30,000 in our annual golf tournament and are grateful to our loyal sponsors and participants. A group from Cornwall, ON also came together to host a third-party event called Sister Strong, raising more than $13,000 for the SSO in honour a local family with 2 daughters, both living with life threatening diseases. In the midst of yet another challenging summer, we are so very thankful to those of you who have made this possible and are looking forward to continuing this momentum into the fall. Coming up: We will be hosting our annual Scleroderma Patient Forum with the Hamilton Scleroderma Group on October 26, 2021, at the Courtyard by Marriott Hotel. Registration will open on our website in the coming weeks at www.hardword.ca and we hope to see you there. Additionally, our virtual support groups are hoping to continue in Mississauga (date TBA), in London on October 2, 2021, at 12pm, with guest speaker Dr. Danielle Rice and in Ottawa on October 6th at 12pm. If you or someone you know is interested in participating, please contact us at info@sclerodermaontario.ca. You are also invited to join us for a virtual day of advocacy with MPP’s at Queen’s Park later this fall (date TBA). Please stay tuned for details.
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SCLERODERMA ALBERTA & SCLERODERMA SASKATCHEWAN Scleroderma Alberta and Scleroderma Saskatchewan are working on dates for their next support group meetings, to be held virtually. Please stay tuned for details. We are also looking forward to a day of advocacy in Alberta with MLA’s in the fall (date TBA). Please feel free to contact us at info@scleroderma.ca if you would like to take part.
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INTRODUCING: FACEBOOK LIVE EVENTS
Dr. Danielle Rice Caring for Loved Ones | September 16 3PM EST
Dr. Elizabeth Volkmann Nutrition | October 7 3PM EST
Maureen Sauve Patient Panel Discussions | December 15 3PM EST
www.facebook.com/SSCanada
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TOOLKIT
Click here to read more.
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RESEARCH ARTICLE
SPIN-CHAT PROGRAM PUBLISHED RESULTS
A program initiated with scleroderma patients isolating due to COVID-19 found benefits from mental health practices delivered in online group sessions Along with illness and death, the COVID-19 pandemic has devastated the economy, strained the health care system, upended social life, interrupted education and day care, and imposed conditions of long-term isolation for many. Providing much-needed mental health services has been a challenge in Canada and around the world. The Scleroderma Patient-centred Intervention Network (SPIN) worked with a team of people with scleroderma to develop a program to support mental health early in the pandemic. The team then undertook an evaluation of the unique intervention the developed with and for people with scleroderma to help alleviate anxiety during the pandemic. Led by SPIN Director Dr. Brett Thombs, in April and May 2020, the team randomized 172 patients from 12 countries to videoconference-based education and support groups, led jointly by health professionals and trained patient group leaders, or to a waitlist control. People in the waitlist control were offered the program in July and August 2020. The team found that anxiety and depressive symptoms were reduced somewhat, although not significantly, at the end of the 4-week program but that six weeks later, they were significantly better among those who received the intervention. “Long before COVID-19 made tele-health common, we established SPIN to create an international support system for people with scleroderma,” said Dr. Thombs, a Senior Investigator at the Lady Davis Institute of the Jewish General Hospital in Montreal, Professor in the Department of Psychiatry at McGill University, and Canada Research Chair. “It was natural for us to build upon this platform to address mental health in the pandemic with our COVID-19 Home-isolation Activities Together (SPINCHAT) Program. We worked with patient partners to develop the right approach. Then, patients who previously underwent support group leader training with us through our SPIN-SSLED Program facilitated the groups along with health care professionals. It really was a case of patients coming together to help patients.”
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People with scleroderma are vulnerable to COVID-19 because many experience significant lung symptoms and take immunosuppressant therapies. As a result, the level of social isolation was extreme for some early in the pandemic. Violet Konrad, from Sherbrooke, Quebec, who has lived with scleroderma for 9 years, led two of the intervention groups. “The program gave many people with scleroderma the will and the means to keep going during the pandemic,” she said. “During a time of great isolation, we were, together, able to create an international community where life was good.” Louise Vidricaire, of Baie-St-Paul, Quebec, who participated in the program, added, “Fear gave way to a thirst to learn more and more.” The study found that mental health outcomes continued to improve after the program finished, potentially capturing the time it took for new skills and social support to take effect. Thus, the researchers concluded, multi-faceted interventions like SPIN-CHAT have potential to address mental health needs in vulnerable groups during COVID-19, even though some uncertainty remains about their effectiveness. “Our findings are consistent with the fact that acquiring and successfully using mental health coping skills is an ongoing process that occurs over time,” said Dr. Thombs. “An intervention like SPIN-CHAT gives participants tools to successfully cope with the challenges they face during the pandemic. We are hoping that our approach will prove adaptable and helpful to other vulnerable groups contending with enhanced isolation and anxiety as they try to protect their physical health by minimizing risk of exposure to COVID-19.” The SPIN-CHAT Program is four weeks long and involves twelve sessions. Participants are educated about, and participate in, exercises that include staying connected, managing worry and stress, relaxation, physical activity, and social support. Although developed for people with scleroderma, the core program elements are applicable to other vulnerable populations coping with stress and isolation brought on by COVID-19. Thombs noted, “There is still some uncertainty about the level of clinical importance of the symptom reductions that SPIN-CHAT achieved, but, in the midst of the current crisis, decisions about support services to provide must be made with less evidence than would otherwise be ideal.” “As the length of the pandemic extends, the mental health needs of the public and how to address them is an increasingly important challenge. The mental health of vulnerable individuals, including those with medical conditions, is of particular concern. Multi-faceted programs similar to SPIN-CHAT may be attractive options because they represent a relatively low-resource option that provides skills and support to up to 10 people at a time,” argued the study’s authors. Dr. Thombs pointed out that the team’s ability to launch such a large program so quickly was due to the support of the Canadian and international scleroderma communities, who came together to provide initial funding to get the program off the ground. “We’re grateful beyond words to all of those who supported this,” said Thombs, including Scleroderma Canada, which provided funds thanks
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to an educational grant for patient support programming from Boehringer Ingelheim; the Scleroderma Society of Ontario; Scleroderma Manitoba; Scleroderma Atlantic; Scleroderma Australia; Scleroderma New South Wales; Scleroderma Victoria; Scleroderma Queensland; Scleroderma SASK; the Scleroderma Association of BC; and Sclérodermie Québec.” Results from the study were published in the journal Lancet Rheumatology and can be obtained from SPIN (spingeneral@gmail.com).
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DR. JANET POPE INTERVIEW F A L L
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Dr. Janet Pope is a Professor of Medicine in the Division of Rheumatology at the University of Western Ontario (UWO), Schulich School of Medicine, London, Ontario, Canada. She is the Division Head in Rheumatology at St. Joseph's Health Centre, London. Her research includes studies in scleroderma, SLE and RA, including outcome measurements, clinical trials and disease manifestations. She has published over 450 peer-reviewed articles, 15 chapters, 500 abstracts and several Cochrane meta-analysis reviews. Mentoring of research students and trainees numbers more than 125. She has received the Distinguished Investigator Award from the Canadian Rheumatology Association, Rheumatologist of the Year from the Ontario Rheumatology Association, Department of Medicine Research Achievement Award, and the Dean’s Award of Excellence in Research. Why did you choose to become a doctor/what sparked your interest in medicine? Helping others. My mom, her two sisters and her mom were all nurses, so medical vocations may be in my blood! What led to your interest in scleroderma? I found the disease very interesting and since it is rare, I thought I could contribute to excellent patient care, education, and research, by focusing on systemic sclerosis. What experiences most shaped the physician you are today? I have learned so much from people suffering with devastating illnesses, including scleroderma. Patients teach me with their stoicism. I am humbled to serve patients and to be a part of their intimate life - health, hopes, desires and how they have to change their life plan when having a chronic autoimmune rheumatic disease. There are many examples, both happy and tragic that make me appreciate what a person's journey is like living with an illness, not just thinking about medical treatments to offer. What have you been doing to cope with COVID and your patients? I am busier since COVID as without travelling to give talks all over the world, I am speaking virtually in the early mornings or evenings. Overall, I find myself working more than before the pandemic, allowing me to see more patients (some in person, others by phone). I am however, thankful to have a job and to help people by still being able to see patients throughout the pandemic to date. I do continue to try to strike a balance by taking time for family and myself. For patients, some avoid COVID exposure by cocooning and others have more stress (fear of illness, fear of loved ones getting sick, loss of work, inability to exercise publicly, etc.). Again, people cope in different ways, many of whom have a positive outlook. What can patients expect from their first appointment with you? 1. Expect I will be late - I am not known for being on time. 2. Expect that you will see a trainee first and then myself. 3. Expect that your questions will be answered and a long discussion if needed. 4. Expect to be offered research such as an observational registry and other opportunities that will vary. 5. Expect to be followed and have tests ordered periodically - labs, echocardiogram, pulmonary function tests. 6. Expect that you will feel valued and listened to and let me know if that is not the case.
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What do you recommend for patients leading up to their first appointment? Have questions planned if that helps you to be organized. Don't be afraid to ask - no health question is irrelevant or unimportant if it is important to you. Write things down if that helps you remember during the appointment. When COVID is over, bring in someone to a listen and ask questions, if that helps you cope with your health. How has your research or continued education influenced the work you do today? In research, I have a hypothesis that usually starts with an observation that I have made in the clinic. Much research helps to prove my impressions to be incorrect or imprecise, so it makes me a better doctor and subspecialist. There are themes that are timely such as how to improve fibrosis in patients with early diffuse scleroderma subset. Some questions are difficult to answer, but I have learned that if we don't try there will for sure be no new answers. I have developed a tough demeanor as many grants are not funded and papers are rejected, but perseverance is important when doing research. I have also learned to talk to people with common language when giving talks and to recognize patterns of questions that seem to be important, trying to put them in my lectures. I have recognized the unmet needs in education for peers and referring physicians and have tried to help with simple recommendations. Tell us a little about yourself, your life, interests, etc? I am busy with family - 7 kids, 4 grand kids. I really like travel (can hardly wait to safely travel again). I think it is important to advocate for healthcare and am involved with patient and professional organizations. I also like to give away money and chair several grants review committees. I don't like exercising but do recommend it for others! What are you most passionate about? I am passionate about the practice of medicine - it is a calling and not just a job. I love to mentor trainees and junior faculty as they are the doctors/rheumatologists of tomorrow. I think ongoing assessment of what we can do and are doing is important to try to continually improve. I learn a lot from my mistakes which makes me a better physician. Is there anything patients would be surprised to learn about you? Not sure as many know I have a very large family. Likely patients would be surprised to know that I am an expert in a few areas and give talks all over the world, so their data has helped to answer important questions. How can patients contact you or be referred? I take referrals from physicians and nurse practitioners and will see patients with scleroderma and other connective tissue diseases, rheumatoid arthritis, other inflammatory arthritis, and some other diagnoses. If my clinic is packed, I also send referrals to my junior colleagues whom I have trained and can see patients more quickly.
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PATIENT
HIGHLIGHT SUNIKA DYALL Jan 5/1990 was the start of a great life for my mom, siblings and myself; the day that we came to this beautiful country we now call home, CANADA. My mom, the eldest of the 15 children, was sponsored by my late grandparents to join her 13 siblings, cousins and other extended family. I went from having 30 people back home to call family to having an undisclosed number of aunts, uncles, first, second, third cousins........ Friends that have now become family! Fast forward to 2001 when the chapter of my life as wife and mom began. We brought our son Daimar into the world. When Daimar was 3 years old we brought home our beautiful baby girl Sunika. We introduced Daimar to Sunika and explained that it would be his job to love and protect his sister. Their bond as siblings grew and flourished from day one to today. Their love, kindness and compassion for each other is unmatched and one that many people don't get to experience.
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Daimar is a very gifted basketball player with a full scholarship to Eckhard College in Florida. Daimar's biggest motivation aside from the love of the game is to make something amazing of himself so he can move himself and family, especially Sunika, to a warmer climate. Having Daimar go off to Florida in Aug 2020 was hard for us as a family but especially difficult for Sunika. Fast forward to my baby girl....
When Sunika was about 5 years old we noticed that her fingers would change colour randomly, we later found out that Sunika has Raynaud. Sunika also had some other health issues such as reflux, trouble getting food down, arthritis, dizziness and at about 9 years old we learned the very difficult word Scleroderma. At that very young age Sunika started attending appointments with her Rheumatologist Dr. Feldman. From that point the list of departments grew to roughly 8.
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Sunika was hospitalized in Jan of 2021 with a Scleroderma related issue and for the first time I think everything became very real for us as parents. For 4 days we were paralyzed by fear. It seems the tests were never ending, the list of doctors grew, new departments were introduced, information overload sounds about right. Although being part of a very large family. We kept our support group very small: my 5 sisters, one of my aunts and my 2 best friends. I kept a small group because sometimes it can be just as overwhelming, and really who wants to sit and listen to me talk about my many many appointments :) My support group is no longer small! During our hospitalization at Sick Kids we decided as a group to open up and let our very LARGE family and friends be aware of what’s been going on with Sunika. I realized that I needed help with understanding Scleroderma and so I turned to an Instagram Scleroderma group. Again, it was information overload and I became even more worried and fearful of my 16 year old child’s future. However it was time for my husband and I to have some hard conversations with our kids about the reality of Scleroderma. We learned that June is Scleroderma month and a great time to raise awareness and money for this great cause. Sunika proved to me how very strong she is when she made a video which we posted on every social media avenue we could. I thought by posting her story there may have been backlash to Sunika. To say we as a family was blown away not only by the physical support but financial support would be an understatement. Our goal of $500 was raised within 20 minutes and Sunika raised close to $7700. Her video was shared by so many that her old teachers saw and donated, her friends reached out to tell her how much they supported her. After the amazing success of the video we decided it was time to do one more thing. As a family we decided to do a physical walk on June 22nd calling it exactly what this disease has given my daughter a fight.... "Sunika's Fight" was created and what a success it was. We had 60 participants show up and ready to walk for our beautiful girl. My mom's family came and even prepared some delicious snacks to go along with our thank you BBQ. We had a DJ volunteer his services, Officer Dan Crawford and friends from 33 Division saw Sunika's video and came out to support and walk with us. We as a family were extremely thankful for everyone that not only donated financially (especially during the COVID tough times) but that came out for our walk. We are thankful for all the wonderful people on the IG Scleroderma group that reached out to Sunika. Offering support by phone calls, texts, DMs, sending encouraging gifts and most of all giving Sunika their insight of their personal fights. Making her see that she is "normal" like all these wonderful people. We know we have a long way to go with this disease but, when you literally have a village behind you bound by blood or not, you don't stop fighting. So Sunika's fight will go on for as long as we have blood, sweat and tears running through our body. Sending love, strength and appreciation to the entire Scleroderma community for supporting my baby and my entire family!
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CARING FOR LOVED ONES: A CAREGIVER'S HANDBOOK
The Scleroderma Society of Ontario is excited to share the upcoming this valuable handbook for caregivers who support a loved one with scleroderma. For many years, caregivers have described the need to have resources developed and available for family members and friends that support a loved one with scleroderma. The caregiver handbook is written by Ms. Danielle Rice, a PhD Candidate in Clinical Psychology at McGill University and a Psychology Resident at St. Joseph’s Healthcare Hamilton. Since beginning graduate studies in 2014, she has been a part of the Scleroderma Patient-centered Intervention Network (SPIN) and has contributed to research focused on individuals that have scleroderma and their loved ones. As a co-author of more than 85 peer-reviewed publications, her scleroderma specific research experiences have been shared in journal articles, at conferences, and through workshops. For the last 8 years, Ms. Rice has also worked with individuals that have chronic health conditions and mental health and substance use conditions. She provides psychotherapy and cognitive assessments to individuals caring for a loved one with a rare disorder, patients with chronic health conditions, and individuals with severe mental health disorders in inpatient, outpatient, and the community settings. Ms. Rice combined her clinical and research expertise to develop the handbook for caregivers, which includes practical tips for managing the difficulties that can come with caring to a loved one with scleroderma. The book contains three main sections focused on (1) adjusting to the role of a caregiver, (2) common challenges that caregivers face, and (3) the ongoing process of trying to stay well as a caregiver. A comprehensive set of resources for caregiving and mental health is also included in the book. Caregivers have contributed to the handbook by providing quotes and personal experiences about supporting a loved one with scleroderma. The handbook aims to facilitate a caregiving role that is as positive and rewarding as possible. It also presents a balanced and authentic understanding of what caregivers to a loved one with scleroderma can face on a day-to-day basis and how resources are available to decrease the burden that can be experienced in the caregiver role.
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ADVOCACY DAY: AB, NB & ON SCLERODERMA
Scleroderma Canada is working closely with Boehringer Ingelheim to host advocacy days in Alberta, New Brunswick, and Ontario. Please stay tuned for date announcements and to find out how you can participate and share your voice!
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SCLERODERMA BLANKETS, MASKS & HANDBOOK
SHOP NOW ➤
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FAMILY FUN FIND THE OBJECTS IN THE PICTURE
BACK TO SCHOOL WORD SEARCH
BOOKS DESK ERASER GLUE LUNCHBOX MATH NOTEBOOK PAPER
PENCIL PLAYGROUND READING RECESS RULER STUDENT TEACHER WRITING