Scleroderma Canada

Scleroderma Canada Scleroderma Canada serves as an advocate nationally for those affected by the disease and works collaboratively with regional scleroderma organizations and the international scleroderma community to achieve common objectives.
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Operating as usual

Fatigue can be very difficult in scleroderma - a deep & different tiredness that doesn't go away with a good night's sle...
01/08/2021

Fatigue can be very difficult in scleroderma - a deep & different tiredness that doesn't go away with a good night's sleep. But you can improve your fatigue by eating well, staying active, and pacing yourself with specific time limits. Read more about dealing with fatigue and other issues by following our Recommended Reading link: https://www.scleroderma.ca/recommended-reading

Scleroderma Atlantic
01/07/2021

Scleroderma Atlantic

Scleroderma Atlantic is pleased to present our fourth webinar: Life with Scleroderma - Personal Stories.

Sharing personal stories is an important way to support each other and know that we are not alone with the challenges that we face.

Over the next few weeks, we will be introducing our five guests and sharing their philosophies on living with scleroderma. We welcome you to share yours in the comments as well.

Join us Sunday, Jan. 17 at 2 pm AST to hear stories from the scleroderma community. Register Here: https://bit.ly/3o7GVMm

GERD is a common complication of systemic sclerosis. When muscles and sphincters don't work properly, stomach acid enter...
01/06/2021

GERD is a common complication of systemic sclerosis. When muscles and sphincters don't work properly, stomach acid enters and damages the esophagus. But there are medications like Prevacid and Pantoloc that can help. Read more about GERD in scleroderma athttps://d64d934c-7d22-42fc-b994-55d2b2103ef0.filesusr.com/ugd/9f0189_028bd8392b6d41aa844ec94aa837d48b.pdf

Scleroderma often results in microstomia, or small mouth. This can make dentist visits burdensome. Exercises can improve...
01/05/2021

Scleroderma often results in microstomia, or small mouth. This can make dentist visits burdensome. Exercises can improve mouth flexibility, and you can ask your dentist to use children's instruments. Read more about dental care:https://d64d934c-7d22-42fc-b994-55d2b2103ef0.filesusr.com/ugd/9f0189_b2f0a731ab144fb288b3214007fcfd86.pdf

Approximately 75% of scleroderma patients will develop Interstitial Lung Disease (ILD). But symptoms can be improved wit...
01/03/2021

Approximately 75% of scleroderma patients will develop Interstitial Lung Disease (ILD). But symptoms can be improved with medication such as rituximab, and lifestyle changes. Another medication, Nintedanib, is the first drug approved by Health Canada for treatment of scleroderma lung disease. Read more about ILD here:https://d64d934c-7d22-42fc-b994-55d2b2103ef0.filesusr.com/ugd/09f65c_25a864ee17d247f980162703c9047799.pdf

Hanging around the house this week? Planning a quiet New Year's Eve? Take a moment to watch some of the presentations fr...
12/28/2020

Hanging around the house this week? Planning a quiet New Year's Eve? Take a moment to watch some of the presentations from this year's National Conference. Visit www.sclerodermaCanada.ca and click "Click here to Watch" - Choose from stemcell transplants, pulmonary arterial hypertension, ILD and more.

Happy Holidays to all of our scleroderma family from coast to coast. From all of us here at Scleroderma Canada, we wish ...
12/24/2020

Happy Holidays to all of our scleroderma family from coast to coast. From all of us here at Scleroderma Canada, we wish you a happy, warm, safe holiday season.

Dr. Brett Thombs, director of SPIN (Scleroderma Patient-centered Intervention Network), has been named a Tier 1 Canada R...
12/17/2020

Dr. Brett Thombs, director of SPIN (Scleroderma Patient-centered Intervention Network), has been named a Tier 1 Canada Research Chair in Patient-engaged Disease Management and Prevention. The Government of Canada has announced an investment of approximately $195 million to support 259 Research Chairs, including Dr. Thombs. Read the press release: https://www.canada.ca/en/research-chairs/news/2020/12/government-of-canada-makes-largest-investment-in-canada-research-chairs-program-and-celebrates-20th-anniversary.html?utm_source=crc&utm_medium=website&utm_campaign=crc_announcement_20201216

Join Scleroderma Atlantic for the Webinar, Getting a Grip on Scleroderma Hands. Speakers Jan Nitti (pictured), board mem...
12/15/2020

Join Scleroderma Atlantic for the Webinar, Getting a Grip on Scleroderma Hands. Speakers Jan Nitti (pictured), board member of the Raynaud’s Organization and Linda Kwakkenbos of SPIN will discuss Raynaud's, digital ulcers and more. December 20, 2pm AST, 1pm EST, 10am PST.

Join Jan Nitti from the American Raynaud’s Organization in our next webinar: Getting a Grip on Scleroderma Hands.

Jan will share facts on Raynaud's, what treatments and medications are available, as well as how to advocate for yourself during a hospital visit.

She will also discuss digital ulcers, their causes, and how to care for them.

Click here to register: https://bit.ly/39RHm9f

Warm up this holiday season with something unique from the Autoimmune Slayer. This scleroderma warrior is offering these...
12/14/2020

Warm up this holiday season with something unique from the Autoimmune Slayer. This scleroderma warrior is offering these wonderful Holiday Gift Boxes containing a mug, a pair of cozy socks and a peanut-free hot chocolate bomb! Proceeds from the sale of Holiday Gift Boxes support the Scleroderma Society.

Shop at https://theautoimmuneslayer.com/collections/merchandise/products/holiday-gift-box

Help us get funds into the hands of researchers by becoming a Giving Member of Scleroderma Canada. This year, so that we...
12/12/2020

Help us get funds into the hands of researchers by becoming a Giving Member of Scleroderma Canada. This year, so that we can direct more money towards our programs, we've moved our annual #BlueRibbon campaign online. Join us: https://www.scleroderma.ca/blue-ribbon-campaign

Find some new ways to live well during the holidays, with suggestions from chronically ill Samantha Moss, who does her v...
12/09/2020
How I Deck the Halls Despite Difficult Days With Chronic Illness

Find some new ways to live well during the holidays, with suggestions from chronically ill Samantha Moss, who does her very best to create new, gentle traditions. https://themighty.com/2020/11/christmas-decorating-celebrating-chronic-illness-disability/?utm_source=engagement_bar&utm_medium=facebook&utm_campaign=topic_feed.story_feed.story_preview_card.engagement_bar%2F&fbclid=IwAR0lOdcycGlhapVyZkOgyOqjwNhrnkmptu2UjaXcNOv9909WbSH_cFCJbiw

"It doesn't have to be lavish to be special, and every moment doesn't have to be happy and jolly."

Every person experiences a unique set of scleroderma symptoms. You don't have to be the poster child for scleroderma, bu...
12/07/2020

Every person experiences a unique set of scleroderma symptoms. You don't have to be the poster child for scleroderma, but sharing your unique experiences with medications, symptoms, or how you speak with your doctors can help others, especially those newly diagnosed.

We would like to express our gratitude to everyone who donated to become a Giving Member of Scleroderma Canada. Your gen...
12/03/2020

We would like to express our gratitude to everyone who donated to become a Giving Member of Scleroderma Canada. Your generosity helps support our programs and those living across Canada with this terrible disease.
#ThankYouThursday

Scleroderma Canada's cover photo
12/02/2020

Scleroderma Canada's cover photo

A great way to donate on #GivingTuesdayCa is to become a Giving Member of Scleroderma Canada. Becoming a member means th...
12/01/2020

A great way to donate on #GivingTuesdayCa is to become a Giving Member of Scleroderma Canada. Becoming a member means that you will be getting behind thousands of patients, caregivers, and physicians, who are already members, and ensure that we can continue our mission to improve the quality of life for those with scleroderma.

This year more than ever, patients need your help. Join us today. https://www.scleroderma.ca/blue-ribbon-campaign

On Tuesday, December 1, your donation can help us continue our advocacy toward treatments that show promise for patients...
11/29/2020

On Tuesday, December 1, your donation can help us continue our advocacy toward treatments that show promise for patients. Right now, we're fighting for approval of PDE5i to treat Raynaud's, digital ulcers, and vasculitis that does not respond to calcium channel blockers. You can support our effort as we fight for a better quality of life for those with scleroderma.
https://scleroderma.ca/donate
#GivingTuesdayCa

We met virtually with the NDP Caucus in Alberta this week to advocate on behalf of scleroderma patients. Thank you to Me...
11/26/2020

We met virtually with the NDP Caucus in Alberta this week to advocate on behalf of scleroderma patients. Thank you to Members of Legislative Assembly, Heather Sweet, Lorne Dach, Richard Feehan, Shannon Phillips, and Kathleen Ganley for your time and willingness to learn how you can help our community.
#HardWordHarderDisease

This week Scleroderma Canada is holding virtual meetings with members of the Legislative Assembly of Alberta. Our goal i...
11/26/2020

This week Scleroderma Canada is holding virtual meetings with members of the Legislative Assembly of Alberta. Our goal is to raise awareness of scleroderma and seek approval of PDE5i (Viagra) in the treatment of Raynaud's, digital ulcers, and vasculitis.
#HardWordHarderDisease

Your gift helps our community by funding advocacy and awareness programs, and ongoing research initiatives. It's less th...
11/25/2020

Your gift helps our community by funding advocacy and awareness programs, and ongoing research initiatives. It's less than a week until #GivingTuesdayCA - please help us continue fighting for a better future for scleroderma patients and their families.
www.scleroderma.ca/donate

Scleroderma patients can experience GERD, a condition that can even affect the lungs. Gastro Esophageal Reflux Disease h...
11/23/2020

Scleroderma patients can experience GERD, a condition that can even affect the lungs. Gastro Esophageal Reflux Disease happens when stomach acid flows back into the esophagus. This acid reflux can irritate and damage the lining of the esophagus or flow into the lungs during sleep. Help raise awareness about the complications of GERD during #GERDAwarenessWeek.

Scleroderma is a hard disease. But research, increased awareness, and education among the public and the medical communi...
11/21/2020

Scleroderma is a hard disease. But research, increased awareness, and education among the public and the medical community is changing lives. On #GivingTuesdayCA you can help change lives too. Donate to celebrate a life or a loved one. Together we will find a cure.
https://www.scleroderma.ca/donate

11/20/2020
Scleroderma Society of Ontario

Excellent advocacy work by the Scleroderma Society of Ontario this week, meeting with Ontario Members of Provincial Parliament. A dedicated team working to improve the quality of life for scleroderma patients.

Thank you MPP Kaleed Rasheed, for your Member Statement in the House today, helping our community to raise awareness of scleroderma and the difficulties patients face - even moreso during the pandemic.
#HardWordHarderDisease #onpoli

For some, scleroderma is an invisible illness - and with that comes stigma. The lack of social awareness can add another...
11/16/2020
Living Under the Stigma of an Invisible Illness — Distorted Perceptions

For some, scleroderma is an invisible illness - and with that comes stigma. The lack of social awareness can add another layer of stress to an already difficult disease. Lydia Aimone writes about her experience, and offers some tips.

This Distorted Perceptions original article outlines one woman’s experience living with invisible physical and behavioral health conditions and it’s impact in the workplace, educational system, healthcare, and personal relationships. Check out the infographics for practical suggestions on combat...

An upcoming clinical trial will test the effectiveness of the Therapeutic Intra-Vascular Ultrasound  TIVUS System in peo...
11/15/2020
FDA Approves Clinical Trial of TIVUS System in PAH

An upcoming clinical trial will test the effectiveness of the Therapeutic Intra-Vascular Ultrasound TIVUS System in people with Pulmonary Arterial Hypertension. The system uses ultrasound to selectively destroy the nerves that cause the pulmonary artery to constrict. Read more about the upcoming study:

The U.S. Food and Drug Administration (FDA) has granted SoniVie permission to begin a pivotal clinical trial of its Therapeutic Intra-Vascular Ultrasound (TIVUS) System in people with pulmonary arterial hypertension (PAH). This "study will provide important information on the safety and efficacy...

This Remembrance Day is different from what's been done in the past. While we can't gather to respect and honour those w...
11/11/2020

This Remembrance Day is different from what's been done in the past. While we can't gather to respect and honour those who served, we can still take a moment to remember them.

We are entering the season of giving, with #GivingTuesdayCA only 3 weeks away. 2020 has made life harder for many. Help ...
11/10/2020

We are entering the season of giving, with #GivingTuesdayCA only 3 weeks away. 2020 has made life harder for many. Help us ensure a brighter future for those living with scleroderma, a painful autoimmune disease. Mark your calendar for Dec 1 and if you are in a position to give, please do.

Everything helps.
www.scleroderma.ca/donate

Scleroderma Canada's cover photo
11/10/2020

Scleroderma Canada's cover photo

Do you use the spoon theory to explain your energy level to friends? The spoon theory was created by Christine Miserandi...
11/06/2020

Do you use the spoon theory to explain your energy level to friends? The spoon theory was created by Christine Miserandino, who has Lupus and Sjogren's. The spoon theory helps healthy people better understand what chronically ill people experience. www.butyoudontlooksick.com

Do you take Iloprost? A recent study published in the medical journal Arthritis & Rheumatology shows iloprost can revers...
11/04/2020
Iloprost Can Reverse Vascular Dysfunction in Scleroderma - Rheumatology Advisor

Do you take Iloprost? A recent study published in the medical journal Arthritis & Rheumatology shows iloprost can reverse vasuclar dysfunction in patients with systemic sclerosis. Read more about the study results here:

Researchers evaluated the cellular mechanism of iloprost in reversing vascular dysfunction in scleroderma.

Will you join us in our advocacy efforts? Engagement can include social media, reaching out to elected officials, and sp...
11/03/2020

Will you join us in our advocacy efforts? Engagement can include social media, reaching out to elected officials, and speaking with community leaders. We empower patients, their families, caregivers, and friends to support the scleroderma community through building awareness. It's an important stepping stone toward more research, improved treatments and a better future for patients.

Address

41 King William Street, Suite 203
Hamilton, ON
L8R 1A2

Opening Hours

Monday 09:00 - 17:00
Tuesday 09:00 - 17:00
Wednesday 09:00 - 17:00
Thursday 09:00 - 17:00
Friday 09:00 - 17:00

Telephone

1-866-279-0632

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Comments

Is anyone here living in Montreal?
Hi everyone I was wondering if anyone in this group have had experience with “Coup de sabre”, Parry-Romberg syndrome? My mother has it in the chin and she heard about a specialist who is a reconstructive surgeon and he mentioned about using hyaluronic acid for fixing the part of the chin where the morphed localized.
I found this powerful sign at a greenhouse. June is #scleroderma awareness month. Join me in my fundraising challenge to battle scleroderma, a rare incurable autoimmune disease. Thanks for your support. #scwalks2020 https://sclerodermaontario.akaraisin.com/walk2020/c0ee30d6b77c4f70a6da467cada1e18d
Did you know that both my wife Beth and I have serious autoimmune diseases? She has lupus and I have recently been diagnosed with scleroderma. I'm guessing there are very few couples who both are autoimmune. Now that I've got your attention, join in my fundraising challenge to battle scleroderma, a rare incurable autoimmune disease. Thanks for your support. #scwalks2020
Hi, I recently proved positive for scleroderma. On Monday I meet with my rheumatologist for the 1st time since the lab tests came back. I appreciate any advise anybody could give me for the appointment, as I don't know what to expect. Are there any specific questions I should ask? I appreciate your kind support.
Rheumatologist confirmed I had scleroderma today. So what do I do? I gave myself a haircut, with mixed results. Lol https://m.facebook.com/story.php?story_fbid=10223989946003387&id=1440127465
Pray for Kayla McCurdy age 31. She is in hospital, very sick. Scleroderma sucks.
This is my friend Patty Dunn who has Systemic Scleroderma. She is very sick and needs expedited treatment before she gets sicker and dies from the disease. Please help her get the treatment she needs NOW!
I am writing to you because I have a life-long friend (She is 58. I am 63 and we've known each other since we were kids) who has just been diagnosed with Systemic Scleroderma this dreaded autoimmune disease. Although she has just recently been diagnosed, She thinks she's probably had it 9-10 years. She lives in Ontario, Canada and it has taken that long for her to be finally diagnosed! That is because of socialized medicine in Canada. There are so few doctors there who know about this disease. I am writing to you because she cannot get treatment in the United States because her insurance won't cover it. She still has to wait a month from now to see a specialist in Canada. She has lost 68 pounds! They are talking about a feeding tube. I am begging you to please help her get treatment immediately before she dies of this dreadful disease 😢 Her name is Patty Dunn. Her address is 58 Chestnut Street, St. Thomas, Ontario CANADA N5R2A7. Her phone number is 519-200-1528. My name is Kristine Litten and my phone #810-335-9041. Please help her NOW. I'm afraid she is going to die. I am sending you a picture of Patty. She is very thin and very sick.
Hi I just had a question .. I have very bad circulation and have been dx with edema and secondary reynauds ..also have another auto immune disease .psoriosis ..I was researching and found that this usually has an underlying cause one being scleroderma ..im waiting to see a specialist a rheumatologist ..just curious to know more about this Chat Conversation End Type a message...
Wondering if the Falls will be illuminated this year?