I have always thought of myself as someone who thrives on being independent. But living with scleroderma does not afford me that luxury.
Scleroderma is a major component of my life. Plainly speaking, it’s not something I can stash away or bring out when I want to, like a party trick. I wake up and go to bed living and breathing in a body that is slowly dying.
Fewer than one in five scleroderma patients seek help from mental health services, an international study found.
The patients most often turned to general practitioners as their providers of mental health care, followed by psychologists and psychiatrists.
When I was diagnosed with scleroderma 21 years ago, it was painful to learn that I was no longer an average 19-year-old who wanted to be a nurse. I was now a patient with a disease that most people hadn’t heard of.
The U.S. Food and Drug Administration (FDA) has cleared Thermo Fisher Scientific to market its blood tests for diagnosing scleroderma and systemic lupus erythematosus (SLE), two autoimmune diseases.
“Autoimmune diseases can be a challenge to diagnose. Reliable and accurate laboratory tests that provide clinical clarity are essential tools for clinicians managing these patients,” Henry Homburger, MD, who directs Thermo Fisher’s Phadia Immunology Reference Laboratory, said in a press release.
“I used to …” I found myself saying that more and more as the years went on, despite my best efforts to maintain normalcy more than 20 years after being diagnosed with scleroderma.
After that diagnosis in 2001, I began to see myself changing: The things I had once enjoyed were now hard to accomplish.
As a child, I loved to dance. This continued into my adolescent years, when I took lessons in tap, jazz, and ballet. Dancing was my first hobby as a child, and I grew to enjoy it immensely. I could close my eyes, let go, and my body would speak for me. I discovered a feeling of freedom that I couldn’t find anywhere else in my life.
The immunosuppressant Rituximab may ease arthritis — an inflammation of the joints — in patients with long-standing systemic sclerosis (SSc), a small Turkish study found.
Join us on Saturday 25 June 2022 for our Annual Scleroderma Seminar.
Our annual seminar is a wonderful opportunity to come together to hear from guest speakers, learn from each other and enjoy support and friendship.
Date Saturday 25 June 2022
Time 8.30am - 3.30pm
Venue Kallangur Community Hall 1480 Anzac Avenue Kallangur QLD 4503
Cost $25 Financial Members, $30 Non-Financial Members
Our instinct is often to go along with what our doctors tell us, as they're the authority figures. However, it's important to be able to advocate for yourself if you feel like a treatment isn't for you, or if your doctor isn't seeing the whole picture.
This is particularly common in conditions like scleroderma, which are so complicated they can involve multiple specialists treating you.
June is Scleroderma Awareness Month, and the scleroderma community is working to increase awareness of this rare disease with several campaigns.
In a video released at the start of the month, the National Scleroderma Foundation is asking everyone to “know scleroderma.”
“To know scleroderma is to understand the impact of a rare disease that can be life-threatening and change lives forever,” said Mary Wheatley, the foundation’s CEO.
“The more you know scleroderma, the closer we are to overcoming scleroderma forever,” Wheatley added.
Scleroderma Queensland Support Group