Scleroderma Queensland
  • Home
  • About Us
    • Members' Stories
  • Become a Member
  • Donations
  • FUNDRAISING
  • News
  • EVENTS
  • Group Meetings
  • Contact Us

Multiple Scleroderma-linked Antibodies Possible in Patients

29/7/2022

 
Picture
​About 2% of people with scleroderma are positive for more than one disease-associated antibody that targets tissues, causing damaging inflammation, according to a new study.
Results suggest that certain antibody combinations may be associated with distinct clinical features.

Read More

Making Today Matter Is More Important Than Worrying About Tomorrow

27/7/2022

 
Picture
The day after my high school prom, a group of us went to an amusement park to continue celebrating. After navigating the ticket line, I noticed a new attraction that looked like one of those free-fall water slides. As I looked up at the endless zigzag of stairs while shielding my eyes from the sun, my heart dropped when I saw a person falling from the top, screaming.

The screams stopped when she bounced up gracefully. I hadn’t noticed earlier that she was attached to a bungee cord.
​
“Who’s with me?” I excitedly asked my friends. My adrenaline was rushing and I couldn’t wait to leap off the edge.

Read More

HLA Gene Variants Linked to SSc Subtypes, Self-Reactive Antibodies

23/7/2022

 
Picture
Variants of immune-regulating human leukocyte antigen (HLA) genes were associated with the risk of systemic scleroderma, subtypes of the condition, and the presence of self-reactive antibodies, a large-scale genetic analysis showed.
These findings underscored the genetic contribution to the disease and support future investigations into immunological susceptibility and external environmental stimuli that trigger autoimmunity in people with systemic scleroderma, the researchers noted.

Read More

Scleroderma Advocacy Can Take a Physical and Emotional Toll

21/7/2022

 
Picture
Lately, my life has been at a standstill.
For the past 15 years, I’ve found purpose in being a scleroderma advocate, using my voice to share my journey and help others. But I feel like advocacy has started to lose its shine.
Six years after my diagnosis, I decided to be open about my journey with scleroderma. Until that point, I’d remained silent about my struggles, as a part of me was afraid of people’s reactions. Would they be able to connect to my story? Another part of me was angry at the hand God had dealt me.

Read More

Taking My Next Step Without Scleroderma’s Permission

19/7/2022

 
Picture
​“Your life is controlled by what you focus on.” I read this Tony Robbins quote when I was diagnosed with scleroderma in 2014, and my takeaway was to focus on my strength and will to survive.
I came across this quote again, eight years later. Only this time, I realized I was still putting my disease at the forefront of my life. Each decision was calculated based on how my body would respond. Each choice was made with my diagnosis in mind. Scleroderma was still in control of my life. I was so focused on being one step ahead of it that I didn’t realize I was being smothered by it.

Read More

List of Rare Diseases Tops 10,000 – and Is Growing – New Analysis Finds

14/7/2022

 
Picture
Nonprofits, scientists, governmental organizations, and the rare disease drug development industry have long cited 7,000 as the average number of rare diseases in the world.
But a new analysis shows there are as many as 10,867 rare diseases globally. And that number can be expected to grow as more discoveries are made, according to researchers.

Read More

Rituximab May Help Stabilize Lung Function in SSc-ILD

10/7/2022

 
Picture
The immunosuppressant rituximab may help stabilize lung function in people with systemic sclerosis-related interstitial lung disease (SSc-ILD), a study suggests.
The study,“Rituximab treatment for systemic sclerosis associated interstitial lung disease – A case series of 13 patients,” was published in the Internal Medicine Journal.

Read More

    Author

    Scleroderma Queensland Support Group

    Archives

    January 2023
    December 2022
    November 2022
    October 2022
    September 2022
    August 2022
    July 2022
    June 2022
    May 2022
    April 2022
    March 2022
    February 2022
    February 2021
    December 2020
    November 2020
    October 2020
    September 2020
    August 2020
    March 2020

    Categories

    All
    Announcements
    Community
    Members Stories
    Research
    Resources
    Scleroderma
    Support
    Support Group Meetings
    Useful Links

Scleroderma ​Association of Queensland

​About Us | Members' Stories | Group Meetings | Become a Member
Donate now
Phone 0468 801 021  Email info@scleroderma.org.au
Postal Address PO Box 316, Salisbury Qld 4107
©Scleroderma Association of Queensland. ​All rights reserved. Website by Grey and Grey. 
  • Home
  • About Us
    • Members' Stories
  • Become a Member
  • Donations
  • FUNDRAISING
  • News
  • EVENTS
  • Group Meetings
  • Contact Us