Chatting with strangers, raising awareness about scleroderma

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.

Raising awareness about scleroderma
A person who takes an interest in what I’m saying may ask about the treatments available to people with scleroderma. I explain that therapies often target a specific symptom or related condition. For instance, a patient might take antacids or a proton pump inhibitor for GERD. I forget to take mine sometimes and struggle to stay away from fried foods, which can trigger an episode. I love chicken wings.

Other scleroderma patients might require a feeding tube for nourishment. Lung fibrosis patients may need supplemental oxygen. Treatment varies for all of us, depending on how our disease manifests.

I tell people that many patients aren’t diagnosed for a few years after symptom onset. During this time, their disease may progress, potentially causing irreversible damage. Early diagnosis is crucial.

June is Scleroderma Awareness Month, providing a perfect opportunity to talk about the need for financial support for research. More knowledge and treatment options will allow patients to receive better care. I explain how we need hassle-free medication approvals from insurance companies, prior authorizations on repeat medicines, and quicker diagnoses. I tell them how important it is to cure this disease.

I share my personal life with strangers to help spread awareness about scleroderma. It’s good for my mental health to share my story. I don’t end my conversations somberly; I mention the great joys I still have, such as watching the television series “Dr. Pimple Popper,” which focuses mostly on dermatological issues. I talk about how I travel with my granddaughters. I am forever reminding myself there will always be someone less fortunate than me. Even when every two out of three days seem incredibly tough, I hold on to my faith. I continue to advocate and fight like a warrior.

I tell anyone who’s listening about the teal ribbon associated with scleroderma and that Scleroderma Awareness Month always includes a fundraising walk.

The strangers I speak to may not remember all they learned about this incurable rare disease, but I do my best to encourage them to attend or participate in upcoming events in their hometown.

​Thank you for chatting and listening.