Scleroderma Awareness


I received this letter* from a scleroderma patient—a very strong young lady who is trying to cope with her illness. I wanted to publish her letter unrevised to bring awareness that scleroderma not only affects internal organs and skin, but also has a significant impact on patients’ teeth.

When I was trying to set up the Lyssova Scleroderma Fund, I came across this pejorative attitude toward scleroderma-related dental issues. It made me want to work even harder to help these patients get the funds needed to fix their teeth.

I wanted to ask the people in charge of making the final decisions to help or not to help—“Have you ever had a toothache? A very bad, excruciatingly painful toothache? The one that hits you like lightning and paralyzes your brain? And you know that nobody can help you because the only way to get to that tooth out is to give you a Joker face?”

That’s how patients with scleroderma feel—making it ever more important that we work together to get them the help they desperately need.

*This letter is published with the author’s permission.

“It took almost a year to actually get diagnosed as I was sent to doctor after doctor and this was after a year of intermittent fever and knee pain. What finally got me to even see a doctor regarding these symptoms was the fact that I have such dental issues. In the last 2 years I have had 4 root canals. I have asked every dentist I know if there was any assistance for patients like myself who have spent in the thousands of dollars to repair my teeth that at this time are so decayed they are near falling out. Even with dental insurance I cannot afford the thousands of dollars my dentist wants to continue repairing my teeth. I am so very fortunate that I will be going to Duke in June to be evaluated in their Scleroderma clinic and I am hopeful they have a dentist on staff because at this time I am at a loss as to what I am to do about my teeth. I work in the ER and am passionate about being a nurse. I want more than anything to be able to continue practicing so I am fighting as hard as I can to do all I can do to remain healthy. I will say that I constantly am hiding my teeth and avoiding a smile which just kills me because I believe laughter is the best medicine and my patients deserve all I have to offer.”

We need to bring awareness about this disease, and I hope to reach out to people who can help. Please share.

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Valentina Lyssova