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Winter Edition THE SCLERODERMA PRESS Scleroderma Canada Newsletter

Executive Director Message

Letter from SC President

Research Funding Update

Provincial Updates

Conference 2022

CSRG Update

Research Update

Meet the Doctor

Patient Highlight

Advocacy Days Update

Patient Perspective Series

Healthy Holidays

Dealing with Stress

Blue Ribbon

Virtual Fundraiser

Hybrid Walks 2022

Merchandise

Family Fun

TABLE OF

Contents

EXECUTIVE DIRECTOR MESSAGE

SEASON’S GREETINGS FROM OUR EXECUTIVE DIRECTOR

With the holidays quickly approaching, Scleroderma Canada is excited to share what we have been working on in 2021 and some of the exciting things we have planned for 2022! We are thrilled to share that this edition of our newsletter brings together updates from our national organization, along with provincial updates from Alberta, Atlantic Canada, British Columbia, Manitoba, Ontario, Quebec and Saskatchewan. We are grateful to our provincial partners for their dedication to those living with scleroderma across Canada and we look forward to continuing to bring you updates from each of them. On behalf of Scleroderma Canada, Lacey Battaglio and myself, we would like to wish you and your loved ones all the best for holiday season and a Happy New Year. We look forward to connecting again in 2022.

John Malcolmson

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SclerodermaFROM Canada THE A MESSAGE PRESIDENT As President of Scleroderma Canada, I would like to take this opportunity to thank each of you for your ongoing commitment to our organization in 2021. With the year coming to a close, we are grateful that you remain engaged with SC, and we hope to keep the momentum going, moving into 2022. 2021 brought us the opportunity to host new educational sessions, run a successful June Awareness campaign, fund critical research and more! It is because of you, our generous members, and donors, that all of this is possible. Our goal in 2022 is to continue to make meaningful and impactful contributions to the scleroderma community in Canada. We look forward to you joining us as we see the safe return of in-person and hybrid events including our June Awareness Walks and our Bi-Annual National Scleroderma Conference in Niagara Falls in September 2022. We hope to have the chance to connect with you in the year ahead. Please take some time to enjoy the Winter Edition of our newsletter, so you can see what your commitment is doing for those living with scleroderma and stay tuned for upcoming events and information. From our Scleroderma Canada family to yours, we wish you all of the best for the holidays and a very Happy New Year. Sincerely,

Colin Magee

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RESEARCH FUNDING UPDATE Scleroderma Canada is proud to share that with the help of the Scleroderma Society of Ontario, we have successfully funded $135,000 in research during 2021! Your donations have helped our organizations fund the following projects: Hamilton Scleroderma Group, Dr. Maggie Larché - $25,000 University of Alberta, Dr. Mo Osman - $50,000 Ottawa Hospital, Dr. Nancy Maltez - $10,000 Canadian Scleroderma Research Group - $50,000 These combined contributions will go a long way toward vital research in Canada and we look forward to sharing outcomes with you in 2022.

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PROVINCIAL UPDATES SCLERODERMA ASSOCIATION B.C. We just received this thank you video from St. Paul’s Foundation about the fundraising we have done. SABC’s Thank you from St. Paul's Foundation, Vancouver BC for the hard work SABC has done this year and in the past years to raise funds for the Scleroderma Clinic and their research. SABC has developed a strong relationship with the St. Paul’s Foundation to support funding for the Scleroderma Clinic at St. Paul’s Hospital and scleroderma research. Over the last 10 years, SABC has raised over $525,000 to support the SABC Research Project through the St. Paul’s Foundation. To our surprise, the St. Paul’s Foundation has brought some of the research team together to thank SABC for our continued participation; Watch the team's thanks here. The aim of the SABC Research Program is to identify biomarkers specific to people who have pulmonary fibrosis caused by systemic sclerosis (scleroderma). Being able to distinguish between pulmonary fibrosis that is idiopathic (of various or unknown origin) or the result of scleroderma will allow medical professionals to provide patients with an accurate diagnosis. Identifying reliable biomarkers also provides an opportunity to develop a functional cure; an ongoing treatment that corrects and prevents the disease from continuing to damage the affected organs (in this case, lungs).

SCLERODERMA ATLANTIC

The team at Scleroderma Atlantic wishes everyone all the very best for the Holiday Season and looks forward to connecting with all of you in the months to come! We have exciting news to share for the coming winter months, starting off with a chance to win big in our Holiday 50/50 Raffle.

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Enter To Win and Make an Impact This Holiday Season Buy a 50/50 ticket for a chance to win! Have fun and support an important new support program at the same time. A portion of the proceeds from the Holiday 50/50 raffle will be used to purchase two pairs of Quanta Vici Smart Heated Gloves, as well as to fund additional patient support initiatives. Visit here to purchase your tickets today. People living with scleroderma in Atlantic Canada can enter for a chance to win a pair of the Quanta Vici Smart Heated Gloves from the raffle on our website here. Get Involved & Connect In Our Monthly Meetups Scleroderma Atlantic holds regular monthly Zoom meetups and are a great way to stay connected with others who are living with scleroderma. They are fun, casual, and social! Our next meetup is on December 17th at 11am AST. Please join us to reconnect, meet some new people, or see people you haven’t had the chance to catch up with for a while. Find the link on our website and social media channels. Learn & Explore Interesting Topics in Our Webinar Series The Scleroderma Atlantic Webinar Series: The final webinar of 2021, Life with Scleroderma - Personal Stories is being held on Sunday, Dec. 19th at 2pm AST. Please visit here to register. The webinars have been very popular throughout 2021 and we look forward to bringing you more in 2022. Watch for registration, topics, and details to follow on our social media! Exciting News: Educational Clips To Spread Education and Awareness Coming Soon! Scleroderma Atlantic is pleased to share that we will be launching a new initiative: Short Clip Educational Videos. Thanks to the support of Boehringer Ingelheim, we are in the process of producing a video series aimed at providing education on scleroderma. Stay tuned to learn more. If you’d like a sneak peek at what is to come, check out our video on CREST.

Register to Stay Up To Date Interested in learning more or staying up to date with what we have on the go? Sign up for our newsletter on our website: www.sclerodermaatlantic.ca

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SCLERODERMA MANITOBA

Warm Holiday Greetings from Scleroderma Manitoba! We are happy to send our best wishes for a peaceful and joyous holiday season to the scleroderma community across Canada. While the pandemic continues to present challenges to all of us, we are heartened by the courage and resilience we see in the scleroderma community in Manitoba. Our goal is to strengthen that community by building awareness and creating connections among all those touched by scleroderma, including patients, their families and caregivers, supporters, and those who serve scleroderma patients. Over the past year, we have seen signs of that strength: patients are providing one on one peer support to each other, attendance at support groups is growing, participation in our annual fundraising walk was strong despite a virtual format, and volunteer numbers are increasing, to name a few. In addition, the switch to virtual webinars and meetings has meant access to excellent presentations hosted by other provincial organizations across Canada, and expanded outreach to patients and supporters. It is important to remember we are not alone. The over-arching theme of our support initiatives is Looking Forward with Hope. As we look towards 2022, not knowing what we will individually or collectively be facing, may we all be filled with gratitude for the support we receive from family and friends and may that give us hope. Our next support group meeting is Saturday, January 22 at 10:30 am CST. If you would like to connect with Scleroderma Manitoba, please visit www.sclerodermamanitoba.com, or email sclerodermamb@gmail.com.

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SCLERODERMA SOCIETY OF ONTARIO The Scleroderma Society of Ontario is excited to share an update from our province. We have been busy working with our members to continue to offer safe, virtual options of our events, while continuing to keep our members engaged and our efforts impactful. Here’s a few highlights since you heard from us last. 13th Annual Hamilton Golf Tournament This year’s tournament was held August 28, 2021, at Flamborough Hills Golf & Country Club. The event sold out with 136 golfers participating to raise over $25,000,00 for the Scleroderma Society of Ontario. We wish to thank our sponsors, including our Title Sponsor FORTINO BROS. for their generous support. We look forward to seeing everyone again in 2022! Hamilton Patient Education Forum The SSO and the Hamilton Scleroderma Group were proud to bring back our annual event, this year returning to the Courtyard by Marriott Hotel, IN-PERSON! Registration was limited for the safety of our guests, but we were honoured to host almost 50 participants to hear from the following guest speakers: Pamela Piotrowski, Dietician Marg Smit-Vandezande, AREP Social Worker Dr. Teresa Semalulu, First Year Rheumatology Fellow – McMaster University Dr. Maggie Larché, Rheumatologist & Chair of Hamilton Scleroderma Group Turkstra Family Gift The SSO is honoured to be the recipient of this generous gift from the Turkstra Family. They have pledged to give $100,000 to our organization, over 3 years, beginning in 2021. We look forward to sharing the benefits that this will provide to the Ontario scleroderma community, and we are incredibly grateful for their ongoing support. Advocacy Days Working with SC, using funds secured from Boehringer Ingelheim, the SSO was honoured to meet with MPP’s and Staff of our provincial government. In total, we hosted 19 virtual advocacy meetings. We also had the distinct privilege to secure a 30-minute meeting with Minister of Health, Christine Elliott. These highly successful meetings allowed us to discuss what government can do to help with drug approvals for our patients. We look forward to positive outcomes in the near future. Upcoming Support Groups Our virtual support groups continue to meet in Mississauga, London and Ottawa. If you or

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someone you know is interested in participating, please contact info@sclerodermaontario.ca. Conference The SSO is excited to host the upcoming 20th Bi-Annual National Scleroderma Conference in beautiful Niagara Falls, ON from September 16th – 18th where we will be joined by healthcare professionals, researchers, and patients living with, or caring for, those affected by scleroderma. The National Scleroderma Conference offers participants the chance to absorb the newest information, learn from the experience of others and gain insight from researchers, physicians, and professional caregivers. Working closely with Scleroderma Canada, we look forward to continuing to enhance the impact of empowering the scleroderma community through education, advocacy and building networks, offering opportunities to become champions for better care, both locally, nationally, and internationally.

SCLERODERMA QUEBEC

We are proud to highlight Scleroderma Quebec’s main achievements for the year 2020-2021 in the following areas of activity: research support, patient support, information and education, awareness, and funding. Since its inception in 1989, Scleroderma Quebec has become the leading source of Frenchlanguage public information on scleroderma and support for scleroderma patients in Canada. A leader in funding cutting-edge scleroderma research, Scleroderma Quebec has contributed to date nearly $3 million in research support. Please take a moment to click on the link below to read Scleroderma Quebec’s full Activity Report for 2020 -2021. Highlights include: Support for scleroderma research in Quebec Information and Education pieces Awareness efforts Mutual Assistance and Support for Patients Funding Please click HERE for the full report.

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SCLERODERMA ALBERTA & SCLERODERMA SASKATCHEWAN

Scleroderma Alberta was honoured to take 3 meetings with MLA’s in November. We met with members of the NDP Caucus, Minister Ron McIver, Minister of Municipal Affairs and Sandra Rees, Director, Pharmaceutical and Health Benefits Branch, Pharmaceutical and Supplementary Benefits Division, Alberta Health. These meetings gave members of SC and patient advocates an opportunity to tell their stories and to share how access to medications (PDE5i and Nintedanib) would improve quality and quantity of life. We are grateful to the members of government who listened, and we look forward to making change in the near future. Scleroderma Alberta and Scleroderma Saskatchewan are working on dates for their next support group meetings, to be held virtually. Please stay tuned for details.

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20th Bi-Annual National

SCLERODERMA CONFERENCE Hosted by Scleroderma Canada and The Scleroderma Society of Ontario

SEPTEMBER 16-18, 2022 Niagara Falls, ON

REGISTRATION INFORMATION COMING SOON!

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CSRG UPDATE

It is with enthusiasm and excitement that I have accepted the position as Director of the Canadian Scleroderma Research Group (CSRG). Under the Directorship of Dr Murray Baron since its inauguration in 2004, the successes are wonderful: More than 1600 patients are enrolled across Canada 15 different centres and 20 different physicians have been recruiting nationwide >$2million have been raised in funding to keep this group going for the past 17 years More than 40 students have worked on projects > 150 manuscripts have been published in scientific journals The CSRG executive and team have created a world-renowned database using YOUR DATA. Thank you to all who have participated so far. With a rare disease, it is important to gather information from many patients so that we can begin to answer important questions like how does it progress, which treatments seem to work best, which subtypes of disease get which clinical manifestations. If you are thinking about getting involved, you can contact your rheumatologist or other healthcare provider, and you could be referred to one of the centres that is recruiting for the CSRG. The database currently involves you reading through, and signing the consent form (the study has been approved by Research Ethics Boards), then there are a series of questionnaires which are completed by you, and some by your physician or their team members. You will be invited to donate some blood and urine for storage, (in the future we may invite you to donate a skin biopsy too – this would be optional). These visits occur annually for the first five years from diagnosis, and then every 3 years after that. Important research questions are identified and using the help of a statistician, the data is analysed to help answer the question.

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What’s new in the CSRG? We have a new team of executive members from across Canada: Drs Maggie Larche (Hamilton), Mo Osman (Edmonton), Janet Pope (London), Sabrina Hoa (Montreal), May Choi (Calgary) and David Robinson (Winnipeg)

We will be inviting any rheumatologist with an interest in scleroderma to join our group and help recruit new patients. Maintaining and developing the pillars of cutting-edge research, inspirational teaching and excellent clinical care will be the mainstay of the CSRG. We will develop biannual English and French continuing medical education events; train new rheumatologists with an interest in scleroderma, and facilitate ongoing world-class research. With scientists, we will continue to work on the fibrosis (scarring), vasculopathy (blood vessel abnormalities) and immune dysregulation in scleroderma. With epidemiologists we will explore the rich dataset of the CSRG to better understand the disease. Together these strategies will improve our understanding of scleroderma enabling knowledge translation to better care of our patients.

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RESEARCH UPDATE

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MEET DR. NANCY MALTEZ W I N T E R

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Dr. Nancy Maltez is a Rheumatologist, clinician investigator at The Ottawa Hospital, Division of Rheumatology. She joined the team in 2018 after completing her internal medicine and rheumatology subspecialty training in Ottawa. She is currently completing her master’s degree in epidemiology at the University of Ottawa. Her main clinical and research interests are in scleroderma, specifically Raynaud’s phenomenon and the use of autologous stem cell transplantation as a treatment. Dr. Maltez is a lecturer at the University of Ottawa and enjoys teaching and mentoring trainees.

WHY DID YOU CHOOSE TO BECOME A DOCTOR/WHAT SPARKED YOUR INTEREST IN MEDICINE? At the very start of my training, I envisioned a career in basic science. I worked in labs and had the opportunity to work with extremely talented scientists. However, what ultimately drew me to medicine was the ability to apply these concepts directly to patient care; I felt as though this type of crossover was the perfect fit for me. Working with and learning from patients is uniquely motivating and I sincerely enjoy going to work every day!

WHAT LED TO YOUR INTEREST IN SCLERODERMA? During my Rheumatology training I had the opportunity to work with patients with a multitude of rare rheumatic diseases. I quickly learned that scleroderma is unique; every patient has a different constellation of symptoms and manifestations, and I was excited to learn more. I began to explore research opportunities and working with the stem cell transplant clinic and hope I can make valuable contributions to the field throughout my career.

WHAT EXPERIENCES MOST SHAPED THE PHYSICIAN YOU ARE TODAY? This is an easy one! Patient encounters. I learn something new from every patient I meet. I feel privileged to be a part of their lives and take pride in trying to learn more about them outside of their disease. Scleroderma is much much more than anything we can read about in textbooks and grasping how the symptoms affect patients’ daily lives is crucial. I’ve also worked with many excellent mentors that have encouraged and supported my interests over the last many years.

WHAT HAVE YOU BEEN DOING TO COPE WITH COVID AND YOUR PATIENTS? This unprecedented pandemic has undoubtedly changed how we practice medicine. Switching back and forth between in person and virtual care has been particularly challenging in rheumatology. Although we worry about exposing our patients, a lot of what we do relies on physical examination, and we’ve had to learn to adjust. I continue to work closely with patients and have remained flexible to whatever is best and safest for them!

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WHAT CAN PATIENTS EXPECT FROM THEIR FIRST APPOINTMENT WITH YOU? I feel as though the first appointment is of upmost importance. I invest time upfront to do a comprehensive review of a patient’s journey to have a good understanding of the details and big picture. Hence, the first appointment will be long, and I will most likely run late (I’m sorry!). I want patients to feel comfortable coming to me with questions or concerns and strive to establish a welcoming environment. Patients should also expect to see trainees; I’m a teacher! Scleroderma is rare, thus opportunities to meet patients with this disease is an important leaning opportunity for medical students and residents. Finally, patients will have homework. After the first visit, I usually suggest many different types of routine investigations including blood work, echocardiograms and lung function testing among others.

WHAT DO YOU RECOMMEND FOR PATIENTS LEADING UP TO THEIR FIRST APPOINTMENT? I would suggest patients take the time to reflect on their questions and write them down. It is not always obvious but none of this is robotic, having this type of disease is a deeply personal experience. I want to understand how this all affects each patient specifically. Thus, it is helpful if patients have pre-emptively thought about what they hope I can help them achieve whether it be from a physical symptom perspective, function or quality of life.

HOW HAS YOUR RESEARCH OR CONTINUED EDUCATION INFLUENCED THE WORK YOU DO TODAY? As an investigator, I have acquired a good understanding of how challenging and important research is especially in a rare disease like scleroderma. I always encourage my patients to participate in research projects if they are interested. Everything we have learned about scleroderma in terms of pathophysiology, symptoms and treatments are the result of contributions from previous patients. I try to always remain cognizant of this in my practice.

TELL US A LITTLE ABOUT YOURSELF, YOUR LIFE, INTERESTS, ETC?! I’ve always lived in Ottawa; I love it here! My husband is also a physician, and we have a beautiful, high-spirited toddler. Like with most young families, our life is relatively chaotic, but we wouldn’t have it any other way! We have a big extended family, and our reunions are amazingly fun! I enjoy many types of crafting, home decorating and organizing.

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WHAT ARE YOU MOST PASSIONATE ABOUT? I have two passions in life, my family and medicine. My family is at the center of my world. Medicine and specifically practicing Rheumatology is an integral part of who I am, it makes me, me.

IS THERE ANYTHING PATIENTS WOULD BE SURPRISED TO LEARN ABOUT YOU? No, I’m relatively boring! Though, I must say I am a big soccer fan and have been known to book vacation time around watching big tournaments. I will fully admit to cheering, shouting, crying and feeling overwhelmingly happy watching the Canadian women’s soccer team celebrate their goldmedal win in Tokyo this past summer!

HOW CAN PATIENTS CONTACT YOU OR BE REFERRED? Patients can be referred to our Rheumatology Clinic at The Ottawa Hospital via their primary care or subspecialty physician. Requests can be sent pertaining to the general scleroderma clinic or specifically for the multidisciplinary stem cell transplant clinic.

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PATIENT HIGHLIGHT SUZANNE C

“I’M PROUD TO SAY THAT SCLERODERMA WON’T KEEP ME DOWN” It was only two weeks after the birth of my son that I started to experience swollen hands, pain in multiple joints, fatigue and itchy skin. As my skin began to tighten, I ultimately became bedridden. I remained that way for 3 years. It was one of the most difficult times of my life and it affected my entire family. I needed help with everyday activities such as caring for my children and to accomplish almost all of life’s daily tasks. It was at this time that I was also affected with gastrointestinal issues, Sjogren’s Syndrome and diagnosed with Pulmonary Fibrosis. I was devastated. Although the first 30 years of my scleroderma journey were very challenging, things have turned around. I am currently able to get out and socialize, I have enrolled in fitness and Zumba classes and was even able to get my motorcycle license! After almost 40 years, I’m proud to say that scleroderma won’t keep me down!

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PATIENT HIGHLIGHT TRACY S

“OVER THE LAST 6 YEARS TRACY HAS HAD UPS AND DOWNS WITH HER SCLERODERMA. TO BE HONEST, MOSTLY DOWNS.”

Tracy was diagnosed almost 7 years ago. At the time of her diagnosis, we didn’t know anything about scleroderma, we just knew it was getting harder and harder for Tracy to perform at work and would no longer be able to continue. One day while our daughter was working at the local pizza shop, she came home to tell us that it was for sale. After a few weeks of family conversation we made the decision to purchase the business. Our hope was that it would be easier for Tracy to run the local pizza shop and work at her own pace. Sales took off and within 3 or 4 months, I had to leave my job to help, as it became too much for just one person to handle. “Over the last 6 years Tracy has had ups and downs with scleroderma. To be honest, mostly

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downs.” We started our fundraiser 3 years ago with the hope of raising some money for research and increasing awareness. $2 from every large pizza sold in the month of June is donated to the SSO. We will keep our fundraiser going as long as we are here, anything to help and to get people talking about this disease. The Scleroderma Society of Ontario has been a huge help to us by providing literature, pins and even stickers to put on the pizza boxes to help spread the word. Tracy and I encourage anyone who is in the position to contribute to think of way to raise awareness and maybe a little money to donate to finding a cure.

submit your story today Would you like to share your story with us?

Everyone has a story.

Please email info@scleroderma.ca

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2022

Advocacy Days SC was joined by Patient Advocates to share their stories with members of government, in an effort to affect change. We are stronger together.

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With funds secured from Boehringer Ingelheim, Scleroderma Canada worked closely with Alberta, British Columbia, New Brunswick and Ontario to coordinate extremely successful, virtual advocacy meetings. Our lobbying partner, Temple Scott Associates, scheduled more than 30 meetings with MLA’s, MPP’s and Staff. 17 patients and 4 Healthcare Professionals volunteered their time to share the importance of timely approvals for medications that would significantly improve quality of life and increase the quantity of life, for scleroderma patients in Canada.

Specifically, we are working to improve access to PDE5i (commonly known as Viagra), to treat Raynaud’s Phenomenon and Nintedanib (Ofev) for those living with Pulmonary Fibrosis Interstitial Lung Disease. We are grateful to those who took the time to hear us and we look forward to sharing positive outcomes as soon as possible.

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Scleroderma Canada PATIENT PERSPECTIVE SERIES Dear Scleroderma Canada, As part of the Medical Students’ Society of McGill University’s Dermatology Interest Group (MDIG), we are responsible for organizing a variety of academic and community outreach events throughout the academic year to 1) expose McGill medical students to dermatology and foster their interest in the field through academic workshops and talks; 2) organize community outreach events aimed at educating the public (including students, youth and underserved communities) on topics in skin disease and skincare; and 3) contribute to advocacy for individuals with skin disease (e.g. through patient panel and open forum events) and promote public awareness of the impact of these disorders on patients’ lived experiences. This year, we are hoping to put together a panel of speakers for a Patient Perspective Series, in hopes of creating more well-rounded and understanding medical students. We believe that being exposed to patient stories will allow us to be more compassionate and, in turn, be better advocates for these individuals in the clinical realm. Our goal is to hold this Patient Perspective Series in the spring, in a virtual format. We are reaching out because we are looking for patients who would be willing to share the story of their diagnosis and how they navigated both the healthcare system and general society during this period. Overall, we are looking to make this a personal and interactive session that will allow us to better understand how the biopsychosocial aspects of such dermatological presentations impact patients. We would very much appreciate you sharing this information with the members of your society. If anyone would be interested in sharing their story, kindly have them contact me at madison.legallee@mail.mcgill.ca or 450-530-5266. We thank you for your cooperation and hope to hear from you in the near future! Kind regards, Madison Le Gallee | MDCM Candidate (2022), McGill University Faculty of Medicine and Health Services | Med-4 Representative, McGill University Dermatology Interest Group (MDIG)

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Healthy Self Care for the Holidays

Dr. Elizabethe Volkmann

During the holiday season, it is important to increase your self-care practices. This time of year can often bring more stress to our lives. Below are some suggestions that may help you create a better balance this Winter.

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1. Try to do calming and grounding activities on a daily basis, such as restorative or yin yoga, meditation and walks in nature. 2. Make sure you are getting enough sunlight each day. With the days becoming shorter, your sleep cycle will be better if you get some exposure to sunlight during the day. 3. Set aside time just for yourself, especially if you are hosting visitors in your home. This could include taking a warm Epsom salt bath before sleep or spending some time reading or journaling. 4. Make sure you are drinking enough liquids during the day. In many areas, there is less moisture in the air in the Winter. Also, we tend to stay inside more with the heater on, which can also create a dry environment. 5. Increase your consumption of foods that are warm, soft and moist, such as soups and pureed vegetables. These foods will not dry out in your mouth while chewing them and will be easier for the body to digest. 6. Start your day with some breathwork. Try inhaling for the count of 5 through your nose and exhaling through your mouth for the count of 10. Repeat this cycle for a few minutes, and each time you exhale, imagine a part of your body that feels tense or sore relaxing. 7. If you feel tired at a gathering, give yourself permission to step away and rest. Your health and well-being always come first. 8. The holidays can often remind us of loved ones we have lost. Allow yourself to feel these emotions and share them with people you trust. Sometimes talking about the feelings that come up helps us to release them. 9. Reflect on what you feel most grateful for. Before you sleep at night, think of 3 things that happened during the day that you feel grateful for, such as hugging your grandchild or watching the snow fall. 10. Finally, remember to forgive yourself. There is so much pressure around the holidays to get everything right and make everyone happy. Remember that your happiness and wellness are just as important as everyone else.

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TIPS FOR INCREASING CHEER AND DECREASING STRESS DURING THE HOLIDAYS

The holidays are quickly approaching and while it can be the most wonderful time of the year, it can also be one of the most stressful times of the year. Traditionally, you might have been surrounded by loved ones, eating delicious food, and focusing on all of the fun memories over the past year. Managing scleroderma amidst an ongoing pandemic means this picture may look a little different. Instead of feeling the buzz of upcoming holidays you may be feeling jitters from stress. Objectively, the holidays this year come with new challenges for everyone, such as item shortages, delayed shipping, travel restrictions, new COVID variants, and varying vaccination status. These are more than enough difficulties to navigate on their own, but pair them with an autoimmune disorder and the stress and anxiety can start to feel overwhelming whether it’s your first holiday with scleroderma or not. If you’re finding that feelings of stress are disrupting your day-to-day well-being, impacting your sleep, or are becoming the main feeling taking over from November until the end of the year, it can be helpful to try some strategies to reduce worry and increase your positive feelings leading up to and during the holidays. This year a likely cause of stress can be committing to plans. You may be trying to navigate travel and vaccine requirements, while considering your current and future health. Family and friends can be supportive and helpful, but they can also be a source of stress during the holidays as you try and make decisions that are best for you. An important part of reducing the stress you feel will likely be making a plan that you are comfortable with. The plan doesn’t have to be set in stone and instead can include flexibility to account for how you’re feeling physically, and relevant public health measures. Picture an “if, then..” decision tree, where perhaps if you feel well, then you’ll follow one set of decisions (e.g., going to others houses for the holidays) but if you don’t feel well, then you may celebrate virtually from the comfort of your own home. If you’re finding that creating a plan like this feels overwhelming, it may help to connect with your medical team. You can ask for their opinion on your travel plans or for input on the number of loved ones you’re planning to be around. A quick rule of thumb is that if it feels like you’re going in circles having the same thought or worry on your mind

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for many days in a row, it’s time to try a coping strategy. Here are five tips to try and make your holiday season healthier and happier while managing scleroderma: Set your boundaries. A practical and helpful step to reduce worry is to take time to set both your expectations and your boundaries. If hosting a large gathering is something that would compromise your energy levels and result in excess fatigue and stress, share this boundary with your loved ones when planning your holidays. Setting your boundaries will often require you to prioritize your wants and expectations. If one of your priorities is to cook a big meal, it may mean that something else has to temporarily move down the list of importance. For example, maybe you want to prioritize cooking as opposed to decorating this year. Setting these priorities and expectations ahead of time can reduce feelings of anxiety and guilt by making your decisions purposefully rather than quickly. Consider adapting holiday traditions based on your health. Plan celebrations for yourself. This may mean preparing or ordering a special meal that won’t compromise any of your food restrictions but that is still a treat. Or if you have hand involvement that makes opening presents difficult, this could be an opportunity to recruit a young family member to help with opening presents. If having visitors at your house or travelling with scleroderma specific items such as medication or an oxygen tank, you can turn up the creativity and decorate these items with lights or ribbons to show your holiday spirit and keep the mood positive even while managing symptoms. Reach out to the scleroderma community. The support of family and friends may be all that you need most of the year. But if you’re finding your health is a stressor at the forefront of your mind, it may be helpful to connect with and confide in the scleroderma community through attending a support group, attending a virtual webinar, making an appointment with your medical team, or speaking with others who have a chronic illness. This can help to normalize how you’re feeling at the same time as getting a sense of how others in similar situations are managing holiday worries. Focus on what you have control over. COVID, travel restrictions, vaccination status of others, weather, and unexpected symptom flare ups all have one thing in common –the inability to (fully) control these situations. You can set yourself up for success and do your best to prepare for what could happen, but ultimately, your time and energy may be better spent focusing on what you can control. This may include sticking with routines that typically make you feel good (e.g., exercise, sleep habits), purchasing or making gifts as early as you can, and looking into health or travel insurance prior to travelling. These tasks can lead you to take action ,whereas wondering if the weather will cooperate near your holiday celebrations can lead to worrying without a solution.

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Stress, diet changes, changing (and cold!) weather and veering away from a normal routine can trigger scleroderma symptoms. Actively prioritizing your health and well-being can help reduce the stress that can come with the holidays and give you the chance to enjoy family, a slower pace, and a wintery view. The more you can find ways to include yourself in holiday cheer in ways that respect any limitations you may have, the more likely that you’ll be able to reflect on the holidays as the most wonderful time of the year.

Danielle Rice

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BLUE RIBBON CAMPAIGN We are excited to announce the launch of our Giving Member Program. This program is designed for people to support patients living with scleroderma. (Note: Patients are automatically members). We are using this holiday season as a launch pad for this important ongoing program. Becoming a member means that you will be getting behind thousands of patients, caregivers, and physicians, who are already members and ensure that we will continue to reimagine vital resources, deliver education programs, and peer-to-peer support groups, continue to raise critical awareness, and invest in research and finding a cure for scleroderma. At Scleroderma Canada, we are working hard to support all our members, and, we need the help of our community.

There are 5 levels of membership $500/year, $250/year, $100/year, $50/year and $25/year. We will be prominently promoting this new program using our social media channels and highlighting the program on our website.

Please click here to donate today!

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Trivia Night

SCLERODERMA

Save the date for Scleroderma Canada’s upcoming Trivia Night February 17th, 2022

Hosted by: Big Dumb Face Trivia

We hope that you’ll join us for a fun night of trivia, with three rounds and a variety of questions, across a wide range of topics.

Dinner and drink packages will be available for purchase and delivery. Stay tuned for details.

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This year, Scleroderma Canada continued to adapt and follow COVID-19 restrictions, for the safety and wellbeing of our members. We are proud of the accomplishments that were made during such a challenging time and are grateful to all our 2021 Virtual Walk, Run or Ride for Scleroderma donors and participants. As we look to #MakeAMoveForScleroderma in 2022, we are excited to announce that we will offer a hybrid approach to the June Awareness campaign, making participation accessible to all. We have learned that although these times have been trying, they have also been a valuable opportunity for Scleroderma Canada to expand our reach beyond the parks and physical places that we once were limited too. It is our commitment to continue to push the limits of our outreach and make sure that the Canadian scleroderma community, far and wide, have the chance to come together and make a difference.

JUNE AWARENESS 2022

A HYBRID APPROACH

We look forward to seeing you in-person and to connecting with you virtually, in 2022.

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HOLIDAY MERCHANDISE Crocheted Outerwear Cozy, warm mittens and toques are as much a part of Canada as our national winter sport, hockey. Stay warm year-round with beautiful, crocheted outerwear items from Samantha Baker and her small business, Bits of This and That. Each piece is hand-made with care and love because Sam knows how important it is to keep warm - even if you're holding a drink on a hot summer day. Bits of This and That’s beautiful toques and mittens are available in an array of modern and contemporary colours. Try the Can Cozy, finished across the bottom to support a drink without squeezing it, and with your hand completely insulated from the drink for extra comfort. You can order from Samantha in the colours of your choice by visiting her Facebook page: https://www.facebook.com/bitsofthisandthat16. Items ship from Ontario and shipping will be calculated at the time of purchase.

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Krafti Kreationz Scleroderma patients Jennifer Botelho and Wendy Vujacic are excited to bring you their collection of custom coasters from the Krafti Kreationz! Jen and Wendy have both lived with scleroderma for more than 25 years. In an effort to spread scleroderma awareness, they have created unique products, available through their Instagram Shop. Shop their line of ready to order stone coasters or contact them to create your own! Also available are their silver ion masks, mugs, glasses and coffee cups with any design. Additionally, they have t-shirts and jewellery, with limited availability.

Part of the proceeds from your purchase goes directly to the Scleroderma Society of Ontario to help us find a cure! Find Krafti Kreationz on Facebook or Instagram today to visit the Scleroderma Shop!

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Book: A Life with Uncertainty Headline: “A source of information, and a guide for understanding the manifestations of scleroderma through reading real life experiences” Claudia Sultan’s memoir paints a vivid a picture of her life prior to diagnosis, her my medical journey with chemotherapy and path of self-discovery and acceptance. Please click here to purchase your copy today!

The Autoimmune Slayer Order your Christmas gifts for the Scleroderma Warrior in your life, today! Visit www.theautoimmuneslayer.com or all of your holiday gift giving needs.

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Christmas

Word Search

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