Scleroderma Society of Ontario

Scleroderma Society of Ontario The Scleroderma Society of Ontario is committed to promoting increased public awareness, advancing patient wellness and supporting research in scleroderma.

The Scleroderma Society of Ontario was founded in late 1985 with the help of The Arthritis Society and dedicated volunteers. With the first executive in place, the challenge began and an open information meeting was held on April 20, 1986 in Toronto. Now based out of Hamilton, Ontario the organization functions daily with a limited but dedicated number of staff and widespread group of volunteers.

"My name is Aaron Sims and I have Diffuse Systematic Scleroderma.  As I've often heard with this disease the symptoms ca...
06/01/2021

"My name is Aaron Sims and I have Diffuse Systematic Scleroderma. As I've often heard with this disease the symptoms came on rather suddenly and unexpected however my story comes with a particular twist.

I was diagnosed in October of 2018. My symptoms manifested rather rapidly during rehab from double hip replacement in February of the same year. This disease changes people's lives and I am certainly no outlier.

I had suffered what I thought was lower back pain for the better part of my middle aged years and it was heartbreaking to hear at 44 that both hips were eligible to be replaced. Always being a glass half full kind of person I changed gears and focused on how great life would be after surgery now that I knew what ailed me. Within 5 months, after a successful surgery and a brief return to my job, I was off again, only to realize that this time there was no cure. My credit for a new lease on life had expired. Or had it?

In the months that followed, I rode the roller coaster that all Scleroderma patients ride. The questions, the fear, the angst, the outrage, the despair. But like a roller coaster, it was a short ride in comparison to the life I've lived. I would not allow scleroderma to change who I was - glass half full. My silver lining came in the knowledge of knowing that had I not suffered from hip pain for as many years as I did, I may not have had the patience to bounce back after my diagnosis. I never would have connected with the wonderful people I've come to know throughout the scleroderma community. In fact, hearing their stories made me realize how lucky I am and made me want to encourage others. At the moment, I am contemplating how I might be able to dedicate some time to give back to the community for all it has done for me. I am hoping to start through participation in this year's "walk".

Scleroderma hasn't ruined my life, it just made it...different. Now, with my credit extended and lease renewed, I can start living my best life."

"My name is Aaron Sims and I have Diffuse Systematic Scleroderma. As I've often heard with this disease the symptoms came on rather suddenly and unexpected however my story comes with a particular twist.

I was diagnosed in October of 2018. My symptoms manifested rather rapidly during rehab from double hip replacement in February of the same year. This disease changes people's lives and I am certainly no outlier.

I had suffered what I thought was lower back pain for the better part of my middle aged years and it was heartbreaking to hear at 44 that both hips were eligible to be replaced. Always being a glass half full kind of person I changed gears and focused on how great life would be after surgery now that I knew what ailed me. Within 5 months, after a successful surgery and a brief return to my job, I was off again, only to realize that this time there was no cure. My credit for a new lease on life had expired. Or had it?

In the months that followed, I rode the roller coaster that all Scleroderma patients ride. The questions, the fear, the angst, the outrage, the despair. But like a roller coaster, it was a short ride in comparison to the life I've lived. I would not allow scleroderma to change who I was - glass half full. My silver lining came in the knowledge of knowing that had I not suffered from hip pain for as many years as I did, I may not have had the patience to bounce back after my diagnosis. I never would have connected with the wonderful people I've come to know throughout the scleroderma community. In fact, hearing their stories made me realize how lucky I am and made me want to encourage others. At the moment, I am contemplating how I might be able to dedicate some time to give back to the community for all it has done for me. I am hoping to start through participation in this year's "walk".

Scleroderma hasn't ruined my life, it just made it...different. Now, with my credit extended and lease renewed, I can start living my best life."

June is... NATIONAL #SCLERODERMA AWARENESS MONTH! Join us in raising awareness and much needed funds to help us find a c...
06/01/2021

June is... NATIONAL #SCLERODERMA AWARENESS MONTH! Join us in raising awareness and much needed funds to help us find a cure. Register or donate today at www.hardword.ca

June is... NATIONAL #SCLERODERMA AWARENESS MONTH! Join us in raising awareness and much needed funds to help us find a cure. Register or donate today at www.hardword.ca

Show us your favourite way to #MakeAMoveForScleroderma! Not just walking, running or biking – you could do yoga, garden,...
05/31/2021

Show us your favourite way to #MakeAMoveForScleroderma! Not just walking, running or biking – you could do yoga, garden, fish, or walk your dog. Get active, share a photo, and tell people why you are raising funds for #scleroderma this year! Register at http://hardword.ca

Show us your favourite way to #MakeAMoveForScleroderma! Not just walking, running or biking – you could do yoga, garden, fish, or walk your dog. Get active, share a photo, and tell people why you are raising funds for #scleroderma this year! Register at http://hardword.ca

05/28/2021

Is your family looking for fun ways to get involved in this year's #SclerodermaWalks? Offer to mow your neighbour's lawn and soon you'll be raking in the dough-nations. 😉
Sign up at http://hardword.ca and let's raise some vital funds for #scleroderma research!

This weekend we encourage YOU to sign up & get active on your walk, run or ride for Scleroderma. Help us raise some need...
05/28/2021

This weekend we encourage YOU to sign up & get active on your walk, run or ride for Scleroderma. Help us raise some needed funds. Need to register? Visit www.hardword.ca to sign up!

This weekend we encourage YOU to sign up & get active on your walk, run or ride for Scleroderma. Help us raise some needed funds. Need to register? Visit www.hardword.ca to sign up!

05/27/2021

"Hi my name is Tracey Magee and I was diagnosed with Diffuse Systemic Scleroderma in June of 2015. After hearing the word Scleroderma at diagnosis, I remember thinking I had no idea what this was, what it meant for me, and how did one diagnosis apply to all the health issues I was experiencing. Of course I had so many questions for my doctor. Unfortunately there weren’t any answers. There wasn’t a scleroderma specific treatment and there was no cure. Even worse; there was no reliable information on a prognosis. Why? Because it is a rare and not a well known or studied disease.
Very soon after I became involved with our provincial support group where I met some kind and supportive patients who had been living with scleroderma for many years. While the disease progression and effects were different in each of them, one similarity stood out, all of them had to educate those around them, even their healthcare providers, on scleroderma. Their tireless and patient determination to advocate for themselves was inspiring. I am now the President of the Scleroderma Association of Saskatchewan as well as the support group leader. I also serve on the board of Scleroderma Canada. For me advocacy means being determined and patient in bringing awareness to scleroderma. I am committed to support others living with scleroderma and being a voice for them. I ask you to join in the support, find an organization near you and get involved in whatever way you are able. Let’s get some answers for the next person who receives this life threatening diagnosis."

05/26/2021

"Hi my name is Ryan Massi, and I was diagnosed with scleroderma in October 2019. I am in my late 30s, and I have a career in utilities. To me, advocacy means not being passive in regards to your battle with scleroderma. By taking an active role, you are speaking up for yourself and communicating with those who can help you through treatment, education and support. It helps determine what is working for you and what does not. When we all advocate, our voices come together to better understand this disease."

"Hello my name is Silvia. I was diagnosed with Scleroderma 13 years ago. It's been a battle to say the least. However, I...
05/20/2021

"Hello my name is Silvia. I was diagnosed with Scleroderma 13 years ago. It's been a battle to say the least. However, I've learned to change my narrative about this disease. I've learned to live beyond my diagnosis and help others with Scleroderma do the same through my advocacy and passion to spread awareness, fight for myself and my fellow warriors. Over the years, I've met some amazing Scleroderma warriors and although we have this life altering disease, we all face our own unique challenges that go far beyond the Google definition of Scleroderma. I ask that you please take the time to learn about Scleroderma. Help show your support in any way you can. This may be a rare disease, but we, Scleroderma Warriors are far beyond rare or basic."

"Hello my name is Silvia. I was diagnosed with Scleroderma 13 years ago. It's been a battle to say the least. However, I've learned to change my narrative about this disease. I've learned to live beyond my diagnosis and help others with Scleroderma do the same through my advocacy and passion to spread awareness, fight for myself and my fellow warriors. Over the years, I've met some amazing Scleroderma warriors and although we have this life altering disease, we all face our own unique challenges that go far beyond the Google definition of Scleroderma. I ask that you please take the time to learn about Scleroderma. Help show your support in any way you can. This may be a rare disease, but we, Scleroderma Warriors are far beyond rare or basic."

05/18/2021

"Hi, my name is Alessia, and I was diagnosed with linear scleroderma in October 2019. I am currently getting my Bachelor of Medical Sciences at the University of Western Ontario. Despite being involved in the sciences, I was completely unaware of what scleroderma was prior to being diagnosed. This diagnosis process took over a year as this already rare disease is even less common in individuals my age. I believe that the length of this process was a result of the lack of knowledge about the disease, in general. I am an advocate for scleroderma because I want its name to be known, so suffering individuals have access to timely diagnoses and the proper medical care to result in the best possible prognosis."

Happy New Year! Wishing everyone a warm and safe celebration at home, with hope for an even better 2021. From all of us ...
12/31/2020

Happy New Year! Wishing everyone a warm and safe celebration at home, with hope for an even better 2021. From all of us at the Scleroderma Society of Ontario.

People living with scleroderma are more than patients. They are teachers, parents, business owners. They are part of the...
12/30/2020

People living with scleroderma are more than patients. They are teachers, parents, business owners. They are part of the community. They are loved. But they are also isolated and coronavirus has made life harder. You can help by becoming a Giving Member. Learn more at https://www.sclerodermaontario.ca/join-today

Boehringer Ingelheim documentary ‘Beyond Breathless’ features Queen Latifah, shining a spotlight on ILD, the scleroderma...
12/29/2020
Queen Latifah, Bernie Williams Join in ILD Film ‘Beyond Breathless’

Boehringer Ingelheim documentary ‘Beyond Breathless’ features Queen Latifah, shining a spotlight on ILD, the scleroderma complication that took her mother's life.

The new documentary “Beyond Breathless,” spotlighting interstitial lung disease (ILD) patients and their families, will feature actress and producer Queen Latifah and former NY Yankee Bernie Williams. “Beyond Breathless” premieres on the A&E television network on Saturday, Dec. 5 at 12 p.m. ...

Would you like to learn more about G.I. involvement, or pain management in scleroderma? Watch presentations from this ye...
12/28/2020

Would you like to learn more about G.I. involvement, or pain management in scleroderma? Watch presentations from this year's National Scleroderma Conference by visiting our website. Visit www.sclerodermaontario.ca and click "Click here to Watch" to see our library of informative videos.

Whether you're with your family or celebrating apart, the team here at the Scleroderma Society of Ontario wish you all a...
12/24/2020

Whether you're with your family or celebrating apart, the team here at the Scleroderma Society of Ontario wish you all a safe and happy holiday.

Scleroderma warrior Silvia P first wrote I Ain't Momma as a poem, and was inspired to turn it into a song by her vocal c...
12/23/2020
I Ain't Momma Today

Scleroderma warrior Silvia P first wrote I Ain't Momma as a poem, and was inspired to turn it into a song by her vocal coach. Moms fighting scleroderma will understand the sentiment of this incredible song-- the constant struggle to find time for yourself, and this is especially true during the holidays. As Silvia puts it "TURN IT UP! Take a few minutes for yourself today and every day because you deserve it!" https://www.youtube.com/watch?v=qFiMNQ5A33o

Songwriters: Silvia Petrozza, Laura Cavacece Song and video Production by: Cleveland Sound Lab

"The biggest way you can practice self-care during the holidays is to listen to your body." When you are chronically ill...
12/22/2020
Holiday Self-Care Tips When You (or Someone You Love) Have a Chronic Illness

"The biggest way you can practice self-care during the holidays is to listen to your body." When you are chronically ill the holidays can be stressful instead of jolly. But McKenzie Schwark has some great tips here in - Holiday Self-Care Tips When You (or Someone You Love) Have a Chronic Illness

The holidays are fast approaching, and with them comes cheer and relaxation. But when you’re chronically ill, the holidays can take on an entirely different meaning. Additional stress, dietary changes, weather changes and being away from home and out of a normal routine can all exacerbate or trigg...

12/19/2020
Watch 2020 National Conference Videos

This year the Scleroderma Society of Ontario hosted the National Scleroderma Conference with a lineup of international speakers, respected in their fields of expertise. Follow the link below to watch any of the presentations, from dentist visits to digital ulcers to research. www.sclerodermaontario.ca

Get toasty this winter with a cozy Kate Spade blanket from the Scleroderma Society of Ontario. Snuggle up with a good bo...
12/10/2020

Get toasty this winter with a cozy Kate Spade blanket from the Scleroderma Society of Ontario. Snuggle up with a good book in your pink, charcoal, or neutral cream blanket. You won't find these special blankets anywhere else. Shop online 👉 www.sclerodermaontario.ca/shop

Check out these SSO customized natural stone coasters, handcrafted on marble and travertine stone by Creative Custom Coa...
12/06/2020

Check out these SSO customized natural stone coasters, handcrafted on marble and travertine stone by Creative Custom Coasters.

A portion of sales will go directly to the SSO to support research and awareness.

Contact them directly at creativecustomcoaster.com or visit them on Facebook, to place your holiday order.

Thank you to everyone who joined our program on Giving Tuesday! Some joined to honour a family member, others for a frie...
12/03/2020

Thank you to everyone who joined our program on Giving Tuesday! Some joined to honour a family member, others for a friend. We look forward to having more Giving Members join us in December and beyond.

We hope you will consider supporting Ontario's incredible scleroderma community by becoming a Giving Member. Please visit https://www.sclerodermaontario.ca/.../this-holiday-season...
#ThankYouThursday

This holiday season we invite you to join thousands of patients, caregivers and physicians by making a donation to becom...
12/01/2020

This holiday season we invite you to join thousands of patients, caregivers and physicians by making a donation to become a Giving Member of the Scleroderma Society of Ontario. Your support lets us 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. Become a giving member: www.sclerodermaontario.ca/join-today

The scleroderma community is like one big family. We are here for scleroderma patients, their families and caregivers, a...
11/30/2020

The scleroderma community is like one big family. We are here for scleroderma patients, their families and caregivers, and encourage everyone to get involved. Sharing social media posts, or sharing something personal - like your own story - can both have a huge impact. Read some patient stories here: https://www.sclerodermaontario.ca/patient-stories

DYK? This is #GerdAwarenessWeek. GERD is a common symptom of scleroderma. When the muscles of the lower esophageal sphin...
11/25/2020

DYK? This is #GerdAwarenessWeek. GERD is a common symptom of scleroderma. When the muscles of the lower esophageal sphincter become too weak to close, stomach acid can flow backwards, damaging the esophagus. If you suffer from GERD, raise the head of your bed at least 4 inches to prevent acid from entering the lungs during sleep.

A very successful week advocating to government on behalf of scleroderma patients, raising awareness and working to have...
11/20/2020

A very successful week advocating to government on behalf of scleroderma patients, raising awareness and working to have Vi**ra approved in treatment of Raynaud's, digital ulcers, and vasculitus that does not respond to calcium channel blockers.
#HardWordHarderDisease
#onpoli

11/19/2020

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

This week we are meeting virtually with MPPs in our quest to raise awareness of, and seek improved treatments for, scler...
11/18/2020

This week we are meeting virtually with MPPs in our quest to raise awareness of, and seek improved treatments for, scleroderma. Special thanks to Minister of Health, MPP Christine Elliott, who took the time to speak with us yesterday in an effort to better understand the needs of our community.

Learn more about our work at www.sclerodermaontario.ca/

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Comments

I have been diagnosed as having probable scleroderma so I have some questions... hope it is ok to ask. Does anyone have issues with their lips peeling off layers of hard skin? Does anyone have severe cramping in their feet that wake them up? Does anyone have spacial or balance issues?
Competed the 5km Virtual Toronto Scleroderma walk ( In Barrie , Ontario) 😁🐕❤!!!!Stay safe everyone and happy healthy walking/running!!💙
We just completed the Toronto Scleroderma 5km virtual walk!! ( in Barrie) 50 minutes!! Stay safe everone!!
Hi everyone, I am Kathy Randolph of Yoga for Scleroderma. Do you know anyone in Hong Kong who has Scleroderma? I am teaching a Yoga for Scleroderma teacher training in Hong Kong November 5 - 7, and a key part of the training is working with volunteers who have scleroderma or arthritis. We are reaching out in Hong Kong, but don't have a volunteer with scleroderma yet. I would really appreciate it if you could pass this on to any groups you are in. Thank you!
I have Scleroderma and have written a Book Called THE GIFT WITHIN SOLD AT SMILE AMAZON Part PROCEEDS TO SCLERODERMA RESEARCH Thankyou and God BLESS http://www.margiekugler.com/
A few years ago my mom Celine Boisvert was diagnosed with scleroderma. With that she suffered from major fatigue, to the point where all she wanted to do was sleep. She had zero interest in anything anymore (house cleaning, gardening, events, you name it- she had no energy to do it!). Someone who wouldn’t know the disease would think she was in a very deep depression. About 4 months ago I introduced her to Juice Plus. Within a few weeks she had noticed a few small changes. Less bloating, little more energy. Then about 3 months in she started feeling amazing! Her energy level had changed dramatically! It was literally a night and day difference! She says feel like about ten years younger!! Celine has since been able to quit 2 of her medications for this auto immune disease, working on a 3rd AND she has been sleeping like a baby!!! If you feel you are ready and willing to take your health back, let’s talk! Contsct either myself or Celine. She would love to chat about her changes and i would love to share anout getting my mother back! ❤ Why waste any time in life feeling anything less than your best!? What have you got to lose!?
In Loving Memory of Irene Goodale Let's help make our Event a successful one if anyone is interested in purchasing tickets to this Event please contact me. Shannon Goodale