Spring Edition
THE SCLERODERMA PRESS Scleroderma Canada Newsletter
TABLE OF CONTENTS Board Update
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June Awareness Update
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Blue Ribbon Update
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Provincial Updates
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Support Group Leaders
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Canadian Scleroderma Information Series
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Meet Dr. Osman
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Ofev PF-ILD Approval from CADTH
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Patient Highlight
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Mallinckrodt Summit
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Research Update: Dr Senecal
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NOW OPEN Article for Grant Submissions
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Global Rheumatology Alliance COVID-19 Vax Survey
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Caring for Loved Ones, Danielle Rice
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Upcoming Events
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Family Fun
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BOARD UPDATE
On behalf of Scleroderma Canada, I am thrilled to share our Spring Newsletter with you, our valued members and supporters. With 2020 behind us, we are excited to look to the year ahead and we thank you for your continued support in 2021.
The COVID-19 pandemic continues to affect us all and we take great pride in maintaining our commitment to keeping those in the Canadian scleroderma community educated and informed about how the virus can impact their lives. With the help of provincial scleroderma organizations and medical professionals across Canada, SC will be supporting monthly webinars;
A Canadian Scleroderma Information Series,
sharing information related to COVID-19. Please visit our website for details at
www.scleroderma.ca. We also look forward to launching our virtual June Awareness campaign on May 1 st which will allow our members to “walk” with us from May 1st until July 15th , 2021. Hope to see you there!
Should you or someone you know have questions about COVID-19 as it relates to someone living with scleroderma, please don’t hesitate to contact us at 1-866- 2790632 or info@scleroderma.ca.
We hope you enjoy our spring edition and look forward to staying connected in 2021.
John Malcolmson
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2021 VIRTUAL WALK, RUN OR RIDE FOR SCLERODERMA
The ever-changing landscape of COVID-19 has pushed Scleroderma Canada to once again pivot our annual June Awareness campaign to an entirely virtual platform to protect the health and safety of our participants and those around them in 2021. With your support, we were able to raise more than $150,000 for scleroderma research and education in 2020 and we will continue with this model for 2021. Our financial goal for this year will be $200,000. We look forward to another exciting year of “walks” kicking off May 1, 2021 and continuing until July 15, 2021. Stay tuned for details including how to win prizes in categories such as youth and adult registration, best walk attire shared on social media, most creative walk shared on social media and more.! Visit www.hardword.ca for information.
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BLUE RIBBON UPDATE Scleroderma Canada was pleased to kick off our annual Blue Ribbon fundraising campaign in November 2020 which ran until January 2021. We shared campaign information through Instagram posts that accumulated more than 75 shares and 40 likes, 11 Facebook posts that reached more than 26,500 people, emails from our national database and mailed donation cards to more than 100 donors from 2019. A total of $7,442.00 was raised for scleroderma research and education for SC’s 2020 Blue Ribbon. We are grateful to our generous donors for their continued support.
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PROVINCIAL UPDATES
SCLERODERMA ATLANTIC Scleroderma Atlantic (SA) continues to provide support to those living with scleroderma and is a proud partner of various national initiatives.
The organization went through an exciting transformation over the past year including an official name change to Scleroderma Atlantic. This was a testament to the outreach that has taken place in the Atlantic Provinces and the desire to continue supporting those affected by scleroderma in the Atlantic Region. The organization, which will be comprised of representatives from each Atlantic Province, intends to increase awareness activities and continue to reach out to various stakeholders in an effort to support those living with the disease.
With the arrival of Covid-19, many activities typically hosted by SA were a little different this year. Our annual Run/Walk in the Park became a virtual event, raising more than $10,000 thanks to the generous support of our donors.
In-person support sessions and a workshop on emotional well-being were offered in Nova Scotia prior to the arrival of Covid-19 along with in-person luncheons within the scleroderma community, which provided an opportunity for patients and caregivers to informally gather.
SA’s Patient Support Facebook group also continues to generate interest and discussion among its members. SA continues to offer the David Shea Memorial Patient Support Fund, which financially assists those who are incurring expenses as a result of living with the disease. To date, more than $15,000 has been disbursed from this fund, directly impacting the lives of those living with scleroderma in the Atlantic Region. Finally, Scleroderma Atlantic continues to offer support to both SPIN and the CSRG, both of which are working hard to enhance the lives of those living with scleroderma. We look forward to continuing these relationships, and working with other like-minded organizations, to support those living with this disease across the country.
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SCLERODERMA SOCIETY OF ONTARIO The Scleroderma Society of Ontario (SSO) is excited to share an update of our 2020 activities. We continued to put our best foot forward, in light of COVID-19, to support our scleroderma community and we are grateful to each of you who contributed SSO’s success through these trying times.
Highlights: Thanks to our members, friends and loyal supporters, The SSO is honoured to share that we were able to contribute more than $100,000 to research in 2020. These funds were granted to researchers across the province, and we are grateful to our donors for making this possible. The SSO was the proud recipient of an Ontario Trillium Foundation grant of $288,000 to be distributed over 3 years. Activities related to this grant will focus on development of virtual support groups. June Awareness walks went virtual, and donations increased by 24%, raising more than $150,000! SSO hosted the first ever Virtual National Conference with more than 150 participants from around the globe. Christine Elliott met virtually with SSO staff, board members and scleroderma health professionals to discuss patient needs and concerns. We also met virtually with more than 20 MPP’s & staff to address concerns in our local communities related to those living with scleroderma. 6 Support group leaders completed the SPIN-SSLED training program, including our Executive Director, John Malcolmson and Manager of Communications and Events, Lacey Battaglio. We plan to implement this training as a prerequisite for support group leaders throughout Ontario. This program will serve to better support the valuable work that our leaders are doing, offering world-class training, customized to the needs of scleroderma support group leaders.
We are humbled and thankful to all of our members for their continued commitment to the organization and we look forward to a successful year ahead.
SCLERODERMA ALBERTA Scleroderma Alberta continues to work closely with our provincial counterparts to provide support to those living with scleroderma in western Canada amid COVID19. We were fortunate to receive training in the SPIN-SSLED program and have since launched monthly virtual support group meetings in combination with Scleroderma Saskatchewan. We are also working on developing collaborative meetings with the Pulmonary Fibrosis and ILD groups with support from Boehringer-Ingelheim.
Virtual walks took place in Edmonton and Sylvan Lake. Walk coordinators/enthusiasts Gillian Little, Edmonton and Susan Dyck, Sylvan Lake shared their journeys on social media to promote the events.
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Gillian committed to walking every day in the month of June, wearing her blue tshirt, posting her distance and photos. She was able to build a significant following on Facebook, generating awareness. Here is one of Gillian’s Facebook posts:
June 13th, 2020
Today was supposed to be the Edmonton Scleroderma Walk before Covid 19 changed our world. So, for Provincial representation, my photo today is of the Albertan Wild Rose, which is in bloom right now. Walk distance: 5.7 km. Running total: 77.9 km.
Susan also picked up on Gillian’s stamina to not let COVID-19 stop her from walking in Sylvan Lake, recording her daily steps along the way. Here is a post from Susan’s journey:
June 5th, 2020
Thanks to all of you who are supporting my cause, especially cheering me on! My motto is: "it's about the people more than the dollars" (but the dollars still help!)
We continued to spread awareness in June with the lighting of various landmarks for World Scleroderma Day including the High-Level Bridge in Edmonton and The Rotary Park Lighthouse in Sylvan Lake. Words cannot express our gratitude to those who helped make these events a huge success, raising more than $14,000 in Alberta. We look forward to continued success in 2021.
SCLERODERMA ASSOCIATION OF SASKATCHEWAN Scleroderma Association of Saskatchewan (SASK) continued to work for the betterment of patients throughout Saskatchewan in 2020. In light of COVID-19, our focus was increased accessibility and outreach through various social media platforms as well as the launch of our refurbished website and an updated logo.
To help the larger Scleroderma community feel less isolated and help with raising awareness, our association president, Tracey Magee, created a video encouraging supporters to submit clips of themselves bopping a blue balloon to virtually “keep scleroderma hope afloat”. The video has garnered thousands of views and it is our sincere wish that these videos kept hope afloat for others, as much as they did for us.
Covid-19 restrictions required us to reimagine our annual walk and June awareness campaign to a virtual one. We launched our first ever virtual walk in the city of Saskatoon and asked participants to submit photos in several categories (pets, blue lights, and street art) to be eligible for prizes donated by several local businesses.
For World Scleroderma Day we lit up City Hall in Regina and the SaskTel Centre in
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Saskatoon in blue and for the first time ever, the flag of Scleroderma SASK was raised at the Saskatchewan Legislature in recognition of World Scleroderma Day Additionally, Health Minister, Hon. Jim Rieter, once again proclaimed June as Scleroderma Awareness Month.
SASK was happy to contribute to research initiatives across Canada including the Scleroderma Patient Intervention Network (SPIN), CHUM Scleroderma Research Chair, and the Canadian Scleroderma Research Group (CSRG).
SASK and Scleroderma Alberta have partnered to hold virtual education and support meetings. To date, our meetings are structured to feature a guest speaker, presenting information in their field of expertise as it relates to scleroderma, followed by open support group discussion. We are grateful to our speakers for their time and commitment to these events and hope they will continue.
Scleroderma SASK is proud of the progress made during 2020 and would like to thank our board, all the volunteers, our partner agencies, and sponsors who contributed to our success. We look forward to beginning anew in 2021 with momentum and enthusiasm.
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GETTING TO KNOW OUR SUPPORT GROUP LEADERS
The Scleroderma Society of Ontario is proud of the work our volunteers do to educate and empower our members through peer-to-peer support groups. We are fortunate to have hard working and committed leaders across the country who while living with scleroderma daily, continue to offer assistance to others. We are grateful for their dedication to Improving the quality of life for scleroderma patients and their loved ones.
We asked support group leaders across Canada the following questions about their meetings, and this is what they shared:
Where is your support group based out of? Gillian Little, AB and online
Tracey Magee, SK and online
Michelle Richard, Atlantic Canada and online
How long have you been leading your group? GL: I have been leading the group in some capacity since 1998.
TM: I have been running the group since October, 2017.
MR: I have been coordinating our meet-ups since spring, 2020
When do you meet? GL: Since the start of our virtual meetings that we run with Scleroderma Saskatchewan, we have begun meeting monthly.
TM: In-person meetings are held twice per year, though since COVID we have begun meeting more frequently. We host virtual meetings, almost monthly, with the Alberta group.
MR: We meet on the 4th Sunday of each month at 2pm AST, for approximately 1 hour.
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How do you meet since COVID? GL: Our meetings are run online via Zoom with the help of Scleroderma Saskatchewan, managing our invitations and registrations.
TM: We meet virtually, using a Zoom platform. Since pivoting to this platform and joining our group with Alberta’s we have been able to increase the frequency at which we meet and expand our group to those looking to meet at different times, and from different locations in Western Canada.
MR: Scleroderma Atlantic has scheduled support activities in to two parts; 1. Monthly meet-ups which are non-structured, as a time and space to check in, ask questions and share experience living with scleroderma. 2. Monthly educational webinars held on the 3rd Sunday of each month.
Do your meetings feature guest speakers? GL: Yes, since moving to our online collaborative group with Scleroderma Saskatchewan, we have begun featuring guest speakers.
TM: Yes, we ask for feedback from our participants to help decide speakers of interest. Sessions will start with the speaker sharing information and fielding questions in a Q&A period. Once this has concluded, the speaker will exit our meeting, allowing time for private conversation between our members.
MR: Yes, Scleroderma Atlantic offers a monthly educational webinar series with HCP’s who speak to topics of interest for those living with scleroderma.
How many people attend your meetings, on average? GL: Our attendance ranges from 3 – 10 people per meeting.
TM: Approximately 20 – 30 members per meeting.
MR: Monthly meet-ups usually have attendance of 6 -12 individuals and registration for monthly webinars has ranged from approximately 25 – 90.
Do your meetings also welcome caregivers? GL: Yes, our meetings welcome all.
TM: Yes, our meetings are open to those living with scleroderma, their loved ones,family members, friends and caregivers.
MR: Typically, our meetings are attended by those living with scleroderma, though we do not exclude caregivers. Our monthly educational webinars are open to all.
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When are you meeting next and how to get in touch? GL: We are excited to collaborate with Scleroderma Canada in their Canadian Scleroderma Series Panel Discussion on March 23, 2021. Please contact me directly to register for our meetings at scleroderma.edmonton@gmail.com or by phone at 780489-7163.
TM: Our next meeting is scheduled for March 23, 2021 at 3pm CST. This meeting will be the second in the Canadian Scleroderma Series Panel Discussion, presented by Scleroderma Canada. Following this, we will meet in April (exact date is TBD). Details of our meetings can be found on Facebook, Instagram, Twitter and online at www.sclerodermasaskatchewan.ca
MR: Scleroderma Atlantic’s next meet up will take place on Sunday, March 28th at 2 pm (AST). Our next webinar: Gastro Challenges with Scleroderma - A Gut Reaction Top to Bottom by Janet Pope, is scheduled for Sunday, March 21st at 2 pm. Recorded webinars are available at www.sclerodermaatlantic.ca and on our YouTube channel. For more information contact info@sclerodermaatlantic.ca
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CANADIAN SCLERODERMA INFORMATION SERIES
Scleroderma Canada is pleased to present this new information series across North America. In partnership with, and hosted by Canadian provincial scleroderma organizations, these educational webinars are planned to broadcast monthly.
February 11, 2021: Dealing with COVID & Vaccines Hosted by: The Scleroderma Society of Ontario More than 120 participants joined us, submitting questions in advance for our esteemed panel of speakers: Dr. Brett Thombs of SPIN (Moderator) Dr. Janet Pope - Rheumatologist, St. Joseph Health Care London, ON Dr. Mark Larche - Canada Research Chair, Allergy & Immune tolerance, McMaster University Dr. John Varga – Rheumatologist, Northwestern University Medical School Maureen Sauve – Patient, Vice President of Advocacy Scleroderma Canada
March 23, 2021: Oral and Dental Care in Scleroderma Hosted by: Scleroderma Alberta & The Scleroderma Association of Saskatchewan many participants tuned in for this popular edition with questions submitted in advance to our guest speaker: Dr. Martin Hogan – Loyola University, Chicago
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April 18, 2021: Getting Active – Where to start & How to keep going Hosted by: Scleroderma Atlantic Please stay tuned for panelist details.
May 29, 2021: Scleroderma Patient Panel Discussion Hosted by: The Scleroderma Society of Ontario Please stay tuned for panelist details.
June 2021: Celebrating June Awareness Hosted by: Scleroderma Canada Please stay tuned for panelist details.
Please stay tuned for panelist details. Webinar recordings are available on our website at www.scleroderma.ca or on YouTube.
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MEET DR. OSMAN
Scleroderma Canada is fortunate to have a vast network of esteemed medical professionals that we can call on in times of need. This also applies to the needs of our patients, and the scleroderma community in Canada would not be where it is without their dedication to research, their endless hours of education and the compassion they have for their patients. We had the opportunity to speak with one of Canada’s leading professionals in Rheumatology, Dr Mo Osman, and ask him a few questions about his journey. Here is what he shared:
Why did you choose to become a doctor/what sparked your interest in medicine? My hope was to have the opportunity to serve those living with systemic sclerosis, who are in need. My initial interest in research led me to exploring the disconnect between what was available in formal research and what I saw in-person, in my office. I aim to continue to be directly involved in making a difference in the lives and well-being of my patients.
What led to your interest in scleroderma? During my PHD training in immunology I made the decision to attend medical school. It was at this time that I encountered someone living with systemic sclerosis who also suffered with pulmonary hypertension and eventually succumbed to the disease. This unfortunate circumstance uncovered the fact that at the time, there was little that could be done to help a patient with this particular condition. Patients with systemic sclerosis were not offered a definitive cure or an opportunity to manage their disease. This inspired me to move into a Pulmonary Hypertension Fellowship and explore the otherwise poorly understood issues related to autoimmunity and vascular problems.
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What experiences most shaped the physician you are today? I would definitely attribute this directly to experiences with my patients. They are the primary drivers of the research that I do and how I interact with them. A direct example of an area of interest is why some patients live with Raynauds Phenomenon alone and do not develop further issues, whereas someone living with systemic sclerosis can develop both conditions. My individual patient experiences have taught me a lot about what can happen with systemic sclerosis on a personal level versus what can come from a textbook. Textbook knowledge doesn’t always prepare you for what people actually deal with day-to-day.
Additionally, I have been fortunate to have many mentors throughout my career. My decision to study rheumatology in medical school was directly influenced by Dr. Harold Yacyshyn. Dr. Marvin Fritzler inspired my transitional research program. Dr. Janet Pope and Dr. Murray Baron remain part of a close network of colleagues who continue to support me. Dr. Sharon LeClaire introduced me to transplantation and how patients with systemic sclerosis require unique attention. Dr. Maurizio Cutolo shaped how I look at microvascular diagnosis for patients with SSc. Dr. Evangelos Michelakis guided me through my PH Fellowship.
Finally, an ongoing mentorship with Dr. Jan Willem Cohen-Tervaert allows me to continue my research with a goal to fast track patients in Alberta who may otherwise be on an 18-month waitlist. We aim to develop and implement a strategy to treat these patients faster, in hopes of changing the course of their disease as it relates to skin fibrosis.
What have you been doing to cope with COVID and your patients? (ie: how has your practice changed)? My practice has changed as I no longer see as many patients in-person as I was once able to, but rather virtually, if necessary. I do still see my SSc patients in-person through our microvascular clinic and any others with concerning bloodwork. I also serve as Northern Alberta’s Adult Immunologist which makes COVID-19 a very busy time for me as I focus on offering guidance and education related to the COVID-19 vaccine.
What can patients expect from their first appointment with you? The direction of a patient’s first appointment begins with bloodwork which we like to be completed in advance, when possible. Without a formal diagnosis, patients are scheduled for a one-hour appointment in order to allow sufficient time to ask and answer questions. I share my availability with my patients, letting them know that they can reach out at any time and usually expect a response within 24-hours. I also encourage them to sign up for MyAHS Connect which is an online service connecting patients directly to their Doctors digitally. I share relevant research information from the University with my patients, allowing them the opportunity to participate where/when possible. Finally, I share contact information to our Support Group Leader, Gillian Little so that they can become connected for peer-topeer discussion if interested.
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What do you recommend for patients leading up to their first appointment? Completed bloodwork is recommended to expedite their first appointment along with reading from reliable resources. Google is not the only (and often not the best) place to get answers. Come prepared with your questions and if I am unable to answer them I will put the time into finding an answer through personal research, or by reaching out to my extensive network of qualified colleagues and friends.
How has your research or continued education influenced the work you do today? My research is about trying to understand where early SSc begins. We want to know what changes occur at a cellular level and why some patients develop rapidly progressing scleroderma and others do not. Additionally, as a transitional researcher, I look to a molecular level, to understand why some people living with SSc have chronic fatigue syndrome. This has influenced the work I do today as I continue to develop a blood test to use in the monitoring chronic fatigue syndrome on a clinical level.
Tell us a little about yourself, your life, interests, etc.? I grew up as a Maritimer in Halifax, Nova Scotia and attended Dalhousie University until moving to Alberta for further education where I met my wife. We now have 2 children: a 9-year-old boy, and a 6-year-old girl. I love soccer and try to play when I can. I also like to fish and spend time outdoors.
What are you most passionate about? Being a good Doctor. This isn’t always about my definition of “good” but rather that of my patients and colleagues.
Is there anything patients would be surprised to learn about you? I am terrible with directions and can be quite clumsy sometimes.
How can patients contact you or be referred? You can contact your family Doctor for a referral. Alternatively, patients are often connected through the Alberta Support Group Leader, Gillian Little. We are also currently working on developing a patient website and hope to launch it in the near future.
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CADTH CANADIAN DRUG EXPERT COMMITTEE RECOMMENDATION Scleroderma Canada is proud to share with our members that OFEV (nintedanib) has received a recommendation from CADTH for reimbursement for the treatment of chronic fibrosing interstitial lung diseases with a progressive phenotype.
CLICK HERE
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PATIENT
HIGHLIGHT My name is Tya Broussard. I live in Nova Scotia. My journey with health struggles started back in 2009 when I was diagnosed with Raynaud’s disease. I was suffering from ulcers and some not-so-fun white or blue coloured fingers.
My difficulties continued for many years as I started suffering from insomnia, tight skin, food getting stuck in my throat, a slow GI tract, calcium deposits in my fingers, elbow, and forearm, and the list goes on.
In September 2016, I married my soulmate, Jeremy. This man deserves so much credit, as he is my biggest supporter and he’s always there whenever I need him. To me this is the most important thing, to have someone who may not completely understand what’s happening, but never judges me. He just listens and does his best to help in any way. He is constantly researching ways to make my life easier.
That November (just 3 months later), I was diagnosed with Diffuse Systemic Sclerosis Scleroderma. I was then put on medication to help relieve some of my symptoms. The following June (2017), I participated in my very first “Run/Walk For Scleroderma” here in Nova Scotia. While there, I met a few others living with this disease and my world turned upside down when I shook hands with people who had lost fingers, and saw people in wheelchairs, and listened as they spoke of those who have lost the battle. I
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knew from that moment, this disease needs more attention and help.
So I decided I needed to raise as much money as I could.
I am very fortunate that I am still able to work a full time job with full benefits. I know not everyone with this disease is that fortunate, so I wondered, where will they get the help they need if we are only raising verylittle each year? We can’t help everyone! But we need to! This brings us to August, 2017. Just 10 months after I was put on medication (and started to feel as if it was working), I was diagnosed with Diffuse Large B-Cell Lymphoma. My Scleroderma treatment was put on hold and the medication was stopped, only to encounter 3 rounds of chemotherapy and 17 hits of radiation. Don’t worry! I’ve been in remission since March, 2018! So now we can go back to what I was doing before the cancer, right? Unfortunately, the answer was, “No. Because of my cancer diagnosis, I am no longer a candidate to take any of the medications available in Canada, because there is a slight chance they would cause some type of cancer and well, we don’t wanna go down that road again. So now I have a rare disease and I am a rare case within that disease. How many of us are out there like me?
So back to the drawing board I go: how can I increase my fundraising? In May 2019, I held an online auction and raised $4140. I also painted rocks and Christmas ornaments and sold them, making over $2000. Since my remission and not being able to receive medication, I’ve needed to do anything I can do to help my life be a bit easier and feel a bit better.
Fundraising helps me feel better. In March 2020, I teamed up with a local pizza place, PZZA.CO-HFX, who offered to give me 2 free large pizzas a month to do whatever I wanted to do with them. My hubby and I thought we could sell tickets for $2.00 each and do a draw every month. Well, this took off! We were able to fundraise hundreds of dollars a month. From March 2020 to February 2021, we raised over $5000 in pizza tickets alone.
My fundraising isn’t a one-woman job. I have the biggest support group of family, coworkers, and friends. Every year at the Run/Walk for Scleroderma, my team keeps getting bigger and the love keeps spreading. I always say this isn’t just my disease, because these people (my support network) have taken on so much to help me and also my hubby, and we are all in this together. I don’t just have a team behind me, I have a flippin ’ARMY.
Every day is a struggle for me — from the time I get up, ‘till the time I lay my head back on my pillow. But I told myself I wasn’t gonna let Scleroderma take over my life, so I work hard to stick with a daily routine. I always go to work, no matter how I’m feeling. That way, once I’m there, my head is in the game and it keeps me distracted (most of the time) from how I’m feeling.
My daily life consists of working an 8-hour day at Costco Wholesale, and I go to the
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gym after work for 1 hour where I do either cardio or weights depending on how I’m feeling that day. I always take 20 mins at the end of my workout to stretch. For me, stretching is VERY IMPORTANT. I stretch every single day! I also do yoga to ease my mind, as this disease seems to want to control you, but it hasn’t got me!
After my cancer journey (and with no medication options for me), I noticed my physical ability at the gym was declining, which is hard on the ego since I’ve been very active since my childhood. Some days I’d cry while sitting on a machine trying desperately to lift what I was able to lift just days before. I have to reduce the weight almost daily. This for me was the biggest obstacle to overcome: knowing I was getting weaker even though I was doing everything I could not to. So in October, 2018, I decided to invest in a personal trainer to help me do things in an easier way, but with the same results. This was a life saver for me as it made me feel more comfortable with what Scleroderma was taking away that I’d worked years to achieve. The trainer helps me to keep moving and gaining muscle. To this day, my mentality when I enter the gym is: what can I do today? And that’s what I do. I hold myself accountable to just show up and do what I can. ‘Cause as the saying goes, “It is what it is.” And that’s the way I look at this disease now. Staying active for me is very important. “MOTION IS LOTION,” as someone once told me. And it’s very true: the more you can move, the better off you’ll be. Even with Scleroderma.
Other things I do to help myself is to visit a chiropractor twice a month to be adjusted and keep things flowing as they should, and to a massage therapist once a month to receive Fascial Stretch Therapy (I highly recommend this). I also watch what I eat and I try to get outside for vitamin D as much as I can. It’s also important for me to get 8 hours of rest (note: I didn’t say sleep) each day. I make sure my body gets the rest it needs (the sleep, whenever that happens, is a bonus). I do paraffin wax treatments on my hands in the winter — that keeps my hands moisturized and keeps the blood flowing. It feels nice and warm too, so that’s a bonus in the cold Nova Scotia winters. I do hand stretching daily as well,which so far has kept my fingers from curling.
With this disease comes lots of difficulties. Scleroderma is so unpredictable, and I feel it’s why people have a hard time understanding it. One day I could be laid up in bed feeling like I got hit by a bus,and the next day I could be running 5 km with a smile on my face. Because of the unpredictability, I’ve had very close people in my life get upset with me for doing what I need to do to take care of myself, which may have interfered with plans or family gatherings. This is heart breaking and has been very hard to understand, but the people who stick by me and try to understand what I’m dealing with, are the people forme.
What I would ask of anyone who has someone living with Scleroderma in their lives, is to research the disease; get informed so you can “try” to understand us! Get involved in the fundraising, get out to the annual walk/runs and enjoy the family atmosphere, meet others living with the disease and hear their stories. Let’s make an invisible disease visible.
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RAISING SCLERODERMA AWARENESS SUMMIT
Summit Sponsored by Mallinckrodt Pharmaceuticals Scleroderma Canada is pleased to host the first Scleroderma Awareness Summit, on Tuesday, April 20, 2021 from 1pm – 4pm EST. This event is
organizations
exclusive to patient
and we look forward to sharing information with you based on the
results of this summit.
Participating organizations: Canadian Arthritis Patient Alliance Canadian Arthritis Society Canadian Organization for Rare Disorders Canadian Scleroderma Research Group Canadian Skin Patient Alliance Save Your Skin Foundation Scleroderma Patient-centered Intervention Network (SPIN) Scleroderma Association of BC Scleroderma Association of Manitoba Scleroderma Association of Saskatchewan Scleroderma Canada Scleroderma Nova Scotia Scleroderma Society of Ontario Scleroderma Quebec
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RESEARCH UPDATE
The Scleroderma Society of Ontario is proud to share with our members that OFEV (nintedanib) has received a recommendation from CADTH for reimbursement for the treatment of chronic fibrosing interstitial lung diseases with a progressive phenotype.
CLICK HERE
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NOW OPEN: SUBMISSIONS FOR SC’S 2021 RESEARCH FUNDING Scleroderma Canada is honoured to support research in the field of scleroderma and systemic sclerosis for medical professionals across the country. Please visit our
website
to submit your application today!
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GLOBAL RHEUMATOLOGY ALLIANCE COVID-19 VAX SURVEY The COVID-19 Global Rheumatology Alliance (GRA) is truly grateful for your support in helping us learn about how COVID-19 affects people with rheumatic diseases over the past year.
As you know, the COVID-19 vaccine deployment has begun and offers hope for us to emerge from the pandemic. However, people with rheumatic diseases around the world have unique issues to consider related to receiving the COVID-19 vaccine. As more people with rheumatic diseases are getting vaccinated, their early experience is important to report. Therefore, the GRA has developed a new survey to learn about their perspectives and experiences related to the COVID-19 vaccine.
Who can take the GRA COVID-19 Vaccine Survey? Eligibility criteria: Adult (ages 18 and older) Diagnosis of a rheumatic disease
NOTE: People can participate regardless of whether or not they have had COVID-19 infection or received a COVID-19 vaccine.
Click Here for the GRA COVID-19 Vax Survey
Feel free to copy and share this URL: https://rheum-covid.org/vaccine-survey/
How can I help get the word out about the GRA COVID-19 Vaccine Survey? Adding The COVID–19 Global Rheumatology Alliance to your websites Emailing your members Advertising the survey in your publications. Sharing information via social media. platforms such as Twitter and Facebook. Please tag us with our Twitter name @rheum_covid, and consider using the Twitter hashtag #Covid4Rheum.
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We created suggested images for you to use on social media that you can download here: Patient Graphics Kit. Please feel free to customize it. If you would like to add your own logo to our images, please place it into the top right-hand corner.
Thank you for working and volunteering around the clock to help improve the care of patients with rheumatic diseases during the pandemic.
Sincerely,
The COVID-19 Global Rheumatology Alliance Team
Stay connected with us on: Our website: https://rheum-covid.org Twitter: @rheum_covid Facebook:facebook.com/rheumcovid Instagram: @rheum_covid
The COVID-19 Global Rheumatology Alliance thanks its corporate supporters!
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NEW HANDBOOK FOR CAREGIVERS AVAILABLE FOR PURCHASE IN APRIL The Scleroderma Society of Ontario is excited to announce the upcoming release of a new 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. Please visit
www.hardword.ca S P R I N G
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UPCOMING EVENTS
Scleroderma Canada is excited to share some upcoming events with you. Stay tuned for details about the following:
April 18, 2021: Canadian Scleroderma Information Series: Getting Active – Where to start & How to keep going. Hosted by: Scleroderma Atlantic
April 20, 2021: Mallinckrodt’s Raising Scleroderma Awareness Summit (invite only)
May 1, 2021: Virtual Walk, Run or Ride for Scleroderma campaign launch (runs until July 15, 2021)
May 29, 2021: Scleroderma Patient Panel DIscussion" with "Living with Scleroderma"
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June 2021: Canadian Scleroderma Information Series: Celebrating Scleroderma Awareness (date TBD). Hosted by: Scleroderma Canada
September 30, 2021: SC’s Evening Under the Stars: A Virtual Fundraising Event feat. Chad Brownley & Dave Hemstad. Please join us for our first ever virtual fundraising event featuring dinner and mixology options, a 30-minute show with comedian Dave Hemstad and 30-minute concert by Chad Brownlee.
Advocacy Days: AB, ON, SK & NB (details TBA)
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FAMILY FUN Try to spot all 20 books hidden within in the picture.
SSO Word Search
Try to solve our newsletter's word search by clicking on the link here.
Scleroderma Skin Raynaud’s Gastrointestinal Joints Muscles Pain Fatigue Sjogren’s Lungs Kidney Heart
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