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.
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.
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.
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.
“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.
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.
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.
Scleroderma Queensland Support Group