Columnist Lisa Weber and her dog Tebow are the perfect match
If a dog could have Raynaud’s phenomenon, my Tebow would be the one to have it. His tiny frame has the thinnest white coat that barely covers him. His pink skin is visible through his fur. And, like me, he’s always seeking out warm spots to cuddle up in.
Sometimes I can’t find him because he’s wedged himself between the pillows on the couch. I get it, though. I always cover myself in blankets and socks when I’m lounging around.
When real patients have unprecedented positive outcomes to a new treatment, it’s tempting to talk about it as “breakthrough” for medical science. This describes the excitement around a new report from researchers in Germany of a radical new treatment for lupus.
The patients in the study – five people with severe lupus – went into remission following pioneering CAR T-cell treatment, which uses genetically altered cells.
The therapy's effectiveness is being tested in a Phase 2 clinical trial
By Somi Igbene, PhD
The experimental therapy MT-7117 reduces lung inflammation, skin fibrosis (scarring), and blood vessel impairment in a mouse model of systemic sclerosis (SSc), a study found.
“MT-7117 demonstrates disease-modifying effects in preclinical models of SSc,” the researchers wrote. “The results of the present study suggest that MT-7117 is a potential therapeutic agent for SSc.”
Our Advocacy Awareness leader, Beth Leach, has released the following press release for the slow walk on 9th Oct 2022.
Please mark this date in your diaries and join us for a light hearted day of fun, friendship and family.
Loving relationships have unique challenges when scleroderma is in the mix
by Amy Baker
A person meets their person. If they are lucky, they fall in love. They may or may not get married. Either way, they lovingly pledge for better or for worse, in sickness and in health.
Too often, the vows we speak to one another are taken for granted. We believe things will always be good, fair, and happy in a relationship. We all have our fairytale version of how a relationship should be.
With each scleroderma death, a columnist wonders why she's a lucky one
by Lisa Weber
Each time I read about another scleroderma warrior losing their battle, a tremendous weight crushes my soul — a combination of sadness, anger, and guilt.
I’ll always remember the fear I could hear in my mother’s voice when I first discussed my scleroderma diagnosis with her. And in my father’s emails filled with questions and research, I could feel his desperation in trying to fix his broken daughter.
ILD first found in 4% to 6% of scleroderma patients in US claims database
Creative treatments are sometimes the way to handle the phenomenon
by Lisa Weber | September 9, 2022
Start your own fundraiser, join us for a slow walk, or just come along to meet others. The choice is yours.
New Farm Park Rotunda
Sunday 9th October, 2022
11.30 am for a Midday start.
Scleroderma Queensland Support Group