I share my story and hope it inspires someone to help in the fight
​by Sherlene Perkins | May 20, 2024

I love to have conversations with strangers and tell them about scleroderma.

I take time during brief encounters at the library, supermarket lines, the nail salon, and airport gates. The challenge is to provide the information in two minutes or less to spark and keep the listener’s attention. I ask if they are familiar with scleroderma and explain how it sneaks in and attacks parts of the body, causing arthritic pain, loss of fingers and toes, skin tightness, and the hardening of organs. I show them my hands and do the pinch test to demonstrate the thickness of my skin.

I also provide some general terminology while telling them that many patients diagnosed with scleroderma experience skin tightening, Raynaud’s phenomenon, and gastroesophagael reflux disease (GERD). Some may also have lung fibrosis, interstitial lung disease, and pulmonary hypertension. I make a point to mention hip-hop singer and actress Queen Latifah, and explain that scleroderma is what her mom died from. The late actor Bob Saget lost his sister to scleroderma as well.

During my chats, I mention the advocacy organizations I have been involved with that help rare disease patients maintain or improve their quality of life. These include the National Organization for Rare Disorders, Global Genes, the Rare Disease Legislative Advocates, the University of Michigan’s RENEW Scleroderma app, Northwestern Medicine, and Rare Patient Voice.
I will even direct people to my website.
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I encourage them to get involved with helping those less fortunate and explain we need access to better healthcare and other supportive services. I tell them that scleroderma is complicated. At times, the disease is silent, and someone won’t know what’s going on until new symptoms appear or an old one reappears.

In my debut column, I share the hurdles I face in my life as a warrior by Sherlene Perkins | February 19, 2024

Yes, I’m a warrior. I was classified as one long before my scleroderma diagnosis since I’m an African American woman and single mom of two adult children. God has been preparing me to be a great warrior since birth.
Learning that I had scleroderma was a relief. The symptoms started July 2019 after six months of excruciating pain and an inability to use my hands. Amid the diagnosis and symptoms, I found solace in thinking sardonically, “OK. Now what?”

The shock was that the doctors told me there is no cure. They prescribed prednisone to help with inflammation and methotrexate to suppress my immune system.
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Disbelief about my bad luck filled me. Now what?

Patients in interview study talk of the various life changes they have to confront by Marisa Wexler, MS | January 23, 2024

Living with scleroderma requires adapting to changes in a woman’s sense of self, but practicing gratitude and accepting change can help patients reclaim themselves, a study aiming for a “grounded theory” of identify management reports.

Its scientists said these findings may lay the groundwork for future studies aiming to develop interventions to help people with scleroderma hold on to their sense of self while navigating life with the progressive disease.
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The study, “Process of Maintaining Self in Individuals Living With Systemic Sclerosis: A Grounded Theory Study of American Women,” was published in the Western Journal of Nursing Research. ​

A columnist praises her husband's approach to being a spouse caregiver by Lisa Weber

We toasted to 18 years as a married couple while looking out over Tampa Bay, Florida. My amazing husband, Ross, had planned out every detail, from the surprise dinner reservations in the city to the romantic sunset-watching at the park. If you know me, you know pulling off a surprise is nearly impossible. Ross endured a week of grilling questions and still kept the itinerary under lock and key.

Although it was a beautiful night, we had to accommodate my blue-toned hands, a result of Raynaud’s, and sit indoors. But we moved forward with the evening and didn’t pay my disease much attention. And even when my gastroparesis limited my options on the menu, we chose to ignore it for the night and focus only on the happy memories we’ve built together.

I even drank wine without worrying about the insufferable inflammation it would cause the next day. Because every now and then, it helps to take a vacation day from scleroderma.

Overwhelmed Columnist Amy Gietzen  struggles with a slew of mysterious symptoms

A chronic, life-threatening health problem can disrupt all aspects of your life, especially when it develops unexpectedly.

When I was diagnosed with scleroderma at age 19, I was overwhelmed by difficult emotions, from fear and worry to profound sadness, despair, and grief. These feelings rushed over me like cold waves of water, leaving me numb and frozen with shock. I felt like I’d never be able to cope.

​For years I put on a brave face. I put my head down and did the work, always trying to be proactive and positive in the face of scleroderma. But I still felt like I was moving further and further away from my goal of stabilizing my symptoms. When would all of my hard work, dedication, and treatment compliance pay off?

Body betrayal is a common experience among people with chronic illness by Amy Gietzen from Scleroderma News

​After I was diagnosed with scleroderma in 2001, I found myself having some strange thoughts, such as, “What’s wrong with me? My body hates me. I hate my body. What did I do to deserve this? Why can’t I just be normal again?”
While many of the feelings I experienced are hard to describe and identify, I vividly remember the feeling of betrayal coursing through my veins for months after my diagnosis.

Because scleroderma can affect people in so many different ways, and because symptoms can ebb and flow and change over time, it can be easy to think that your body is out to get you. For me, it felt like my body was betraying my trust in it.

I can’t recall a time since my diagnosis that I wasn’t in pain or, at the very least, uncomfortable with the changes I was experiencing. In my first few years with scleroderma, I felt like I had no control over what was happening to me. At any given time, my hands would cramp, my muscles would stiffen and tense, and my skin would itch so intensely that I needed to ice it with cold packs.

Life with scleroderma can be a struggle. Sometimes, when the pain seeps into my bones and fatigue keeps me in bed for hours, the battle seems insurmountable.

But even on those difficult days, I’ve learned to fake it until I make it. I can’t tell you how many times I’ve plastered a smile on my face and pretended everything was fine when, in reality, I felt far from OK.

Why do I do that? Why do I feel the need to put on a brave face and ignore what’s happening in my body and mind? Why is it more comfortable to lie instead of owning my truth — the painful, the stressful, and the miserable?

Lying to doctors
I discovered early on in my diagnosis that no medication or treatment could alleviate my symptoms completely. On good days, some of the pain and discomfort subsided, but on the worst days, the treatments would barely touch the physical discomfort traveling up and down my body.
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I’d leave appointments so disappointed not to have a permanent solution to my ulcerated sores or itchy skin. Over time, I built up armor to shield me from the letdowns until I eventually became emotionally numb to the physical pain.
It seemed pointless to be honest with my doctors. Looking them in the eye and telling a bald-faced lie about how I felt quickly became second nature.

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.

 ​When I'm frustrated with myself and my body, I see my biases at work - by Lisa Weber from Scleroderma News

I sat on the shower floor in complete exhaustion, a scrubbing brush in one hand and a natural disinfectant in the other. Physically, I was at my breaking point. But the shower was only half-done.
It’s tough throwing in the towel, but my body sometimes just doesn’t cooperate long enough to complete certain tasks. And if I push past the pain and exhaustion, I risk a major flare-up with unrelenting inflammation and fatigue.
So I did what was best for my body. I tapped out and crawled out of the bathroom. I managed enough strength to plop myself on my bed to rest and brainstorm a solution. Failure only happens if I quit!
​Finding tools to adapt to my limitations
​Did you know the internet has a wealth of results for the search “disabled cleaning tools”? Accepting disabilities caused by my scleroderma doesn’t make me weak. Strategically planning ways to stay independent gives me power over my shortcomings. It takes emotional strength to be unstoppable, and that’s what I strive for each day.
One search turned up a power scrubbing brush, a hand-held pole with a spinning brush to make scrubbing surfaces easier. I was so excited about this new purchase and couldn’t wait to clean the rest of my shower with no effort!
And when that box showed up on my doorstep, I acted like a kid on Christmas morning. I tore open my package, gave it a full charge, and dashed straight to the bathroom to test it.
It started out fantastic! Cleaning bubbles coated each tile, and the brush spun around like helicopter blades. I could clean all day with this nifty tool! I even imagined my future self sipping a glass of wine while nonchalantly moving the pole around.
But there was one problem: The motor died before the last wall was finished. Perhaps I received a defective product? Perhaps my definition of “clean” is too exhausting for any tool or person in this world? I’ll definitely try another brand before giving up, but this experience taught me an important lesson.

How to cope when even a well-meaning phrase can cut daggers by Amy Gietzen from Scleroderma News

“Wow, you were just discharged from the hospital? You look healthy to me.”
I can’t remember a time when words have hurt me more.

According to the U.S. Centers for Disease Control and Prevention, more than 53% of Americans are living with a chronic medical condition. As startling as that statistic may be, chronic illness, especially scleroderma, tends to create an extremely isolating way of life.

Scleroderma has a way of singling you out, maybe because no case of scleroderma is like another. This uniqueness can include symptoms both usual and unusual, and some of them are invisible to an onlooker. This leads to misconceptions about our physical complaints, one of the more upsetting aspects of living with scleroderma.
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These misconceptions are often packaged in scornful condemnations and accusatory statements of laziness, forgetfulness, or well-meaning ignorance. The reality is that just because we look OK, it doesn’t mean we are OK — physically or emotionally.