Marlea Depriest – Overcoming Scleroderma
Grace Phillips
The Ashland Beacon
Scleroderma is a chronic, rare autoimmune disease. Exactly how rare is it? There are only about 250 cases per MILLION people. When a person has scleroderma their body makes too much collagen. The excess collagen causes hardening and tightening of skin and muscles. The word itself means “hard skin”. However, scleroderma can also affect any tissue in the body—the heart, lungs, kidney and cause them to tighten or harden as well.
Typically, the disease is found in 30-50 year olds and in more women than men, but there is also a juvenile form of the disease. According to Cleveland Clinic’s website, only two percent of the people with scleroderma are under the age of 10. There are only 5,000-7,000 children in the entire United States with the disease. Marlea Depriest is one of those extremely rare cases.
Tiffany Depriest, Marlea’s mom, shared, “When Marlea was two years old, we noticed she couldn’t make a fist. We thought there was a problem. We took her to the doctor, but they just pushed us off and said everyone’s body moves in different ways. It was not until the day before her 5th birthday before we finally got a diagnosis of scleroderma.” There are two different types of scleroderma, localized and systemic. Marlea’s diagnosis was for systemic, which is the more severe type because it not only affects the skin but can involve her internal organs as well.
Unfortunately, autoimmune diseases are very difficult to diagnose. Their symptoms mimic so many other diseases it can take an average of four years to get a true diagnosis. Tiffany continued, “I thought it was rheumatoid arthritis, but the pediatrician didn’t agree since there was no family history with it, but my mom’s gut knew something was not right.” This started the long journey to the final diagnosis. The next step led them to an orthopedic doctor in Huntington who thought it may have been another rare disease and decided to watch her for a while. After some skin changes, they went back to the ortho who referred them to Children’s Ortho in Cincinnati. It was there they were referred to genetics and rheumatology. As soon as she saw rheumatology, the diagnosis was made.
One of the ways to diagnose scleroderma is a blood test, but that was also one reason that Marlea’s case was so difficult. “Her bloodwork has never been indicative of the disease…“They never really know where she’s at because her levels are so good” added her mom. “She has a lot of skin involvement and that affects muscle mass. The doctor explained it was kind of like candle wax. Her skin gets shiny as she loses the muscle mass.”
Treatment for scleroderma is difficult at best, and for young children, it’s almost impossible. For children under six years old, there is nothing approved for them. Tiffany continued, “Embrol was the only thing they could use. They had to give her a diagnosis of juvenile RA in order to get Embrol approved for her. The symptoms were basically the same as RA, so that medication helped control those. She was on this for about a year. Then after she turned six, we were able to switch to Orencia and methotrexate.” It is important to note that these medications only control the symptoms and lessen the effects of the disease on her organs...there is no cure for scleroderma.
Despite the difficulties Marlea faces, most people have no idea she has any illness. Her mom remarked, “Perhaps it is because she has had this for as long as she can remember, and it is all she has known, but she never complains.” She added, “In the beginning, I went above and beyond. I bought the big grippers for the pencils and scissors with the spring assist to make it easier for her. She finally said, ‘mom I don’t need that!’ The only thing she really complains about now is going to the doctor.”
Marlea is now almost 13 years old and is excelling in all aspects of life. She recently received an invitation to join the National Junior Honor Society and earned a spot in the 2023 Ohio Regional Spelling Bee. Sherry Risner is the youth leader at Mavity Free Will Baptist where Marlea attends church and said, “Marlea is very special. She loves to write and is constantly making notes and writing stories. She is just a joy to have in class. Unless we knew her history, we would never know she had a problem.”
What does the prognosis for the future look like for Marlea? Tiffany admitted, “I don’t know… nobody knows…just treat symptoms and you kinda see. Of course, as medicine gets better, hopefully, they will figure out a cure.” However, one thing is for sure, Marlea Depriest may have rare disease, but the disease will never have her.
There are many sources of information about scleroderma online including the National Scleroderma Foundation at scleroderma.org. You can also find a number of support groups on Facebook.
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