Scleroderma News ​columnist, Amy Gietzen, shares her thoughts on chronic illness and relationships

I’m a lot of work, even on a good day. Living with scleroderma requires me to spend a lot of time and energy on maintaining my health. Because of this, I often wonder if a potential life partner would think I am worth the emotional and physical effort a relationship would require of them.

Sometimes I feel lonely. I’ll wonder “what if” — what if someone loved me for me? I’m not talking about a parent’s love for a child, or even that of a friend. I’m talking about mind-numbing, all-consuming, once-in-a-lifetime romantic love. I’m envious of those who’ve found their person in life.

I know it sounds like I live in a fairy tale. But sometimes I get stuck in the thought that I’ll miss out on romantic love for the rest of my life.

After living with scleroderma for over 20 years, I have a good idea about what it would take to be a partner to someone who has it. When I imagine my own partner, there are some traits I think are important.

A romantic relationship with a chronically ill person is marked by ups and downs. If you’re starting a relationship with someone who has scleroderma, you should be prepared for the fact that it won’t be easy. It requires patience, communication, and understanding by both partners.

Researchers study high levels of the ADAR1 protein in macrophages by Margarida Maia, PhD

The protein ADAR1 occurs in great amounts in macrophages, a type of immune cell that appears in the early stages of systemic sclerosis (SSc), making the cells more active and stirring up a “turmoil” of inflammation, a mouse study found.

Researchers also observed that mice in which the disease was induced by injection of a chemical — bleomycin — developed fewer symptoms in their skin and lungs when engineered to have ADAR1 deficiency in macrophages. Their macrophages also made fewer certain inflammatory molecules.

The findings suggest that “targeting ADAR1 could be a potential novel therapeutic strategy for treating sclerosis,” the researchers wrote.
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The study, “ADAR1 promotes systemic sclerosis via modulating classic macrophage activation,” was published in the journal Frontiers in Immunology.

Case study highlights option of a second stem cell transplant for relapsed SS
by Patricia Inácio, PhD 

A 42-year-old man with scleroderma responded well to a second stem cell transplant after experiencing a disease relapse with lung involvement following his initial transplant, according to a recent report.
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Improvements in skin thickening and lung function were quickly seen, and the patient was still in remission two years after the procedure.

The study, “Case report: A successful second autologous hematopoietic stem cell transplantation in refractory systemic sclerosis, with positive effect on skin involvement, pulmonary function and microcirculation,” was published in the journal Frontiers in Immunology.

Blood levels of the periostin protein were associated with the degree of skin and cardiac involvement, but not lung or blood vessel involvement, in people with systemic sclerosis (SSc), a study found.

Levels of the protein also were higher in patients with diffuse forms of SSc, those living with the disease for a shorter time, and in male patients.

Findings overall suggest that periostin may be a useful biomarker for predicting disease severity, particularly cardiac complications, in SSc.

“To our knowledge, this is the first study to show that periostin is elevated in SSc cardiac tissue,” the researchers wrote, noting that “future work will need to prospectively investigate periostin levels in SSc patients.”
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The study, “Periostin overexpression in scleroderma cardiac tissue and its utility as a marker for disease complications,” was published in the journal Arthritis Research and Therapy.

People with systemic scleroderma (SSc) who test positive for cyclic citrullinated peptide (CCP) antibodies are more likely than those who test negative to develop interstitial lung disease (ILD) — when the lungs become scarred — and have worse lung function.

​That’s according to data from a South Korean study that included people with systemic lupus erythematosus (SLE) or myositis, disorders with symptoms that sometimes overlap with scleroderma.
The study, “A retrospective analysis of the relationship between anti-cyclic citrullinated peptide antibody and interstitial lung disease in systemic sclerosis,” was published in Scientific Reports.

A CCP antibody test looks for anti-CCP antibodies in the blood. They are a type of autoantibody that wrongfully turns against healthy tissues in the joints.

Blood levels of microRNA-27a found abnormally low in women with SSc - ​by Lindsey Shapiro, PhD

The levels of a small RNA molecule called microRNA-27a, or miR-27a, are significantly lower in the blood of women with systemic sclerosis (SSc) compared with healthy women, a study shows.Thus, “MiR-27a could serve as a reliable diagnostic marker for SSc,” researchers wrote, adding that the molecule “could be considered as a treatment option both for SSc and its related disorders and complications, which indeed necessitates further investigations.”
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The study, “MiR-27a as a diagnostic biomarker and potential therapeutic target in systemic sclerosis,” was published in Scientific Reports. 

Analysis of immune cell gene activity may predict patient's response to treatment - by Marisa Wexler, MS 

Analyzing the global genetic activity of immune cells called monocytes can identify distinct groups among people with systemic scleroderma, a new study indicates.
This type of analysis “may represent a viable mechanism for identifying patients and potentially their response to therapeutics,” its researchers wrote.
The study, “Three Distinct Transcriptional Profiles of Monocytes Associate with Disease Activity in Scleroderma Patients,” was published in Arthritis & Rheumatology.

Patients with persistent symptoms used more healthcare resources, researchers said - by Lindsey Shapiro, PhD

Tobacco use by systemic sclerosis (SSc) patients is linked to worsening gastrointestinal (GI) symptoms, but the immunosuppressive and anti-scarring medications used to treat the autoimmune disease aren’t, according to a recent analysis of data from a multicenter, U.S.-based patient registry.
The findings are striking in light of previous studies that suggested certain medications might drive GI problems in SSc patients, whereas tobacco hasn’t yet been linked to this type of symptom, noted Sarah Luebker, a doctor of osteopathic medicine, the study’s first author ,and a rheumatology fellow at Vanderbilt University Medical Center.

When I moved to Florida in 2002, I knew nothing about tropical climates, other than they’re great for beach vacations. While unpacking the moving truck, I sat down in the grass for a quick rest. That was my first mistake.

Within seconds, my upper legs were covered in fire ants. The tiny monsters went straight to work injecting their venom. No matter how fast I swiped them off, they had already left behind burning bites all over the back of my legs and up to my lower back.

​Once I was finally rid of them, I made my second mistake: I scratched the burning itchiness that had spread across my skin. That was a quick lesson: The scratching only exacerbated the problem and made it last longer.

​She was fumbling through her coupon book, desperately trying to ignore the stares and loud sighs. As the line to the cash register grew, the moaning and groaning intensified.
I gently said, “Take your time. You’re doing great.”
The young woman locked eyes with me, and I could instantly feel the pain in her heart. I choked back tears as she began to smile. Her grin spoke volumes, as if to say thank you for understanding.