Navigating Life with Scleroderma: A Conversation with Maria Cestaro

October 18, 2023
Science Magazine

The immune system exists to protect the body against invading foreign pathogens. Sometimes, it goes too far. When the immune system identifies substances native to its own body as foreign, it attacks any cell presenting this substance and creates autoimmunity. One subset of autoimmune dysfunction, known as scleroderma, encompasses a group of chronic autoimmune diseases that deteriorate the connective tissue and joints of an affected individual. These autoimmune attacks can cause skin tightening and hardening on both the surface and deeper within the body, affecting organ function, inflammation, and mobility. Eventually, this can progress into arthritis or other complications. Though scleroderma can present in individuals of all age groups and sexes, it is most commonly observed among 30- to 60-year-olds, with females outnumbering males by four to one. As of today, there is no cure for scleroderma and its related autoimmune diseases.

Scleroderma presents in two forms: localized and systemic. Systemic scleroderma affects tissues such as blood vessels and the heart, lungs, and gastrointestinal tract. Common variants of systemic scleroderma are CREST syndrome, Raynaud’s syndrome, and rheumatoid arthritis, which can occur in isolation or as comorbidities with other conditions. CREST syndrome is characterized by the formation of thick calcium skin deposits, or calcinosis. In Raynaud’s syndrome, arteries offering blood flow to the extremities become significantly narrow, causing sensitivity or numbness to temperature changes. Rheumatoid arthritis stems from the body attacking its own joints, causing extreme pain and inflammation.

In March 2023, I was introduced to Scleroderma United, a non-profit organization founded to increase awareness within the broader community and serve as a platform to share patient stories and experiences surrounding life with scleroderma. On a social media “deep-dive,” I encountered Maria Cestaro’s Instagram profile: her enthusiastic and motivating presence on social media serves as a beacon of support and positivity for other scleroderma warriors, especially fellow women, striving to navigate their diagnosis. I reached out to her to request to share her story through Scleroderma United’s publication platform titled “Scleroderma Stories.” 

Above: Maria Cestaro with her husband, Frank, and daughter, Mackenzie. Image courtesy of Maria Cestaro.

SG: Hi, Maria — why don’t you tell us a bit about your story?

MC: I am Maria Cestaro, born and raised in the town of Cold Spring, New York. I will be 52 years old this September, and I'm married. I've got a 23-year-old, and she's graduating. I run three businesses. I am a certified health coach. I was always a very athletic and sports-oriented individual. I played sports in college. 

I’ve lived a life of several hardships. I had seizures in my childhood. I found myself going through a divorce for several years. I was broke and broken, and I just found my way through life, constantly grinding. I've traveled. I have family in Greece, and I love that. I go back and forth there. Life has just been interesting for 52 years!

SG: When were you first diagnosed with scleroderma?

MC: I wasn't diagnosed until I was 50. For a long time, I had swelling in my hands, but I never thought there was a problem. I just knew that when I got hot, my hands were really bad; or when my hands got really cold, or when my feet got cold, it would hurt. I just thought there was something wrong with me, so I never paid attention to it. 

When I was 45 years old, all of a sudden I started having a lot of digestive problems. They had to open up a duct in my system because bile was always building up. It was just one thing after another after. I had endoscopies and colonoscopies; none of them showed any cancer or anything like that, so I thought I was fine, but I wasn't. Nobody could figure out what was causing all these things to happen and why I needed to go through all these tests. I would have episodes where my enzymes would shoot right through the roof, but nobody could tell the reason behind it. I had to have another procedure called an ERCP, which diagnosed me with acute pancreatitis, and they were like, “This is something that really nobody ever gets.” But for some reason I did. 

In April 2022, I retired from my position in the construction business with my family because my middle finger was hurting really badly. Two weeks later, it was getting worse, and then it swelled. I was on the phone with somebody, and when I looked over, I realized my right hand had started swelling badly and wasn't recognizable. I was having a hard time typing because I couldn't bend my fingers. I was like, "What the heck?" and "How does it go from the left hand to the right? It's not possible.” 

The doctor calls me, and she explains to me that I've been diagnosed with CREST. I asked her, ‘What is that?" and she explained it to me. That night, I ended up in the ER because the pain and swelling kept getting worse. They confirmed the diagnosis of Raynaud's. 

My skin is thickening around my lower legs. I have markings all over my face. I have a heart condition. My lungs are inflamed, and I have acid reflux. It's affecting my vessels. The cold weather is not my friend. Everything hurts then. My body is not functioning properly. Some days are good. Some days are not good, and I just keep on going because I don't want to stop. I feel like there's got to be a win somewhere along this road. I'm not sure where or why, but I just feel like there should be. That's how the journey has been. 

SG: How has scleroderma affected your life?

MC: I have naturally curly, wavy hair and always blow it out. There are times when I've just got to leave it as it is because I can't hold the brush or the dryer. When I look at myself, I see all this curly hair, and it's like, oh, well: this is me now. It’s also affected how I brush my teeth. It’s affected me so much that I can't do promotional walks like March of Dimes anymore. I can’t be on my feet that long. I can't be in the sun like I used to. Even when cooking, I have to make sure that the meals are easier. I can't do all the cutting, even holding a pot. It's changed things. But at the same time, you know, it's just a quicker dinner, but it tastes just as good. Getting into bed, I have to sit up because I can't lie down flat. I had to get used to sleeping while sitting up. I had a few nights where I had to come out of my bedroom and just sit straight up on the recliner because the pain was so bad. I get things like heart palpitations. Sometimes it's worse when I walk 50 feet, but other times I could do 150 feet with almost nothing wrong. You've got to find a balance of adjustments that works for you. I've learned to adapt to it.

SG: Have you seen any new symptoms develop?

MC: The symptoms are progressively getting worse. My hands and blood vessels have gotten worse; the pain is in my fingertips and toes. It feels like I have these tight bands attacking my feet. My joints are a lot worse than I am willing to admit, as are the markings on my face. I've got dental problems now. And what's crazy is that I was always dependent on supplements. I've always tried to have good nutrition. I'm not big on medication. So when they offered me pain management, I was like, “You know, I'll deal with the pain.” I'd rather take a bath and add some salt. Before I took painkillers, they'd gotten worse. And I'm doing pretty much all of the things to try and slow it down. I've probably been eating the best I have in years.

SG: What inspired you to share your story or your experience on social media? What was the trigger for you?

MC: It's really funny. I'm happily married, and I have an engagement ring. I post with all my jewelry and also work out in it, never taking it off. But one day people saw that it was not on my finger. They were starting to spread rumors, and I thought, “The truth needs to come out. I'm not getting divorced.” So I shared the story of what happened and that my hands had swollen so badly that I couldn't get my ring on. That's how the social media part hit, and then a good friend of mine said to me, "You need to share your story." 

I asked why and he told me that there are people out there that are struggling, some of whom may be suicidal, because this changes who you are. It gets worse, I'm sure. There are women whose entire career paths have been impacted, as well as their marriages and childrearing. 

That's why the story had to come out — because people are struggling. I started to share. I have a hashtag, I also wanted to share because of my self-made success; I want people to know they can still do it. I want people to know that it's not over until it's over. Fight the fight, dig deep, and just always look for the win, even if it's a small one. That was another thing for me to share with women. I've built successful businesses, and they can, too. 

Above: Maria Cestaro was invited to a speaker engagement series to deliver remarks on financial literacy. Image courtesy of Maria Cestaro.

SG: How is your support system? Have you found other support groups, maybe social media groups?

MC: When I first got diagnosed, I couldn't use my hands at all, and my husband went around and changed every single doorknob to a lever so that I can just press it down. He's my biggest supporter, and my daughter is as well. I also did join a group on Facebook. I'm not that active in it, but I do check and support people. I stay focused on the positive. I'll fight right to the end.  

SG: How have your connections been with friends after your diagnosis?

MC: My connection with friends took a toll because I was the friend who always reached out to everyone. When I got diagnosed and was having all these bad days, I stopped talking to my friends. It was almost two months before I spoke to anyone. But I don't really talk about it, so they don't know the depth of what goes on behind closed doors; I couldn't expect them to understand. How could they if I'm not explaining it? 

But now that they understand, I'm a little bit more forthright about what's going on. I will say that I can't stand up today, that the pain in my legs is really bad, or that my feet are hurting. I will share it now. I never shared anything. I was never a sharer in life. Now I'm opening up to that concept.  

SG: What advice would you have for scleroderma patients or patients with other chronic illnesses? 

MC: The best thing is to get in a room with people who have some better information and advice, which I didn't know about. Look for someone extremely knowledgeable about your body to help you put the right foods in your body. Don't just take one person's take on it; look around and get to know the people a little bit. You know who you are. 

I beg you to do two things: one, drink a lot of water and get your body hydrated. The second thing is to reduce stress, which comes in all shapes and sizes. Right before I was diagnosed, I was going through a tremendous amount of stress for about four years, and so the timeline puts it all together: having all these digestive issues for four or five years. I beg everyone to please get rid of the toxicity in their lives; it does not benefit you at all.

Above: Maria Cestaro organizes an event centered around empowering women. Image courtesy of Maria Cestaro.

SG: What would your advice be for patients who are struggling to develop the mindset that you have built?

MC: You know your mindset; if you're not learning every day, then you're just stagnant. It's not just learning about the disease. But there are so many things out there that can elevate you mentally. There are books to read, podcasts, and all kinds of amazing things and tools, and they're free. There's so much knowledge out there, so educate yourself and improve your life. Your life is important; it's so valuable. Never, never give in to an obstacle or a label.

Thanks to Scleroderma United and Scleroderma Stories for allowing Duke Vertices to repurpose and republish Maria Cestaro’s interview. I would also like to thank Maria for sharing her story and serving as an unwavering role model for the numerous scleroderma warriors who look up to her!

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