This is not medical advice. Please consult a healthcare professional if you are experiencing any of the conditions described in this article.
As a swimmer, I spent countless hours with goggles on, a staple of the sport. What began as a minor irritation soon spiraled into a nightmare, leading to debilitating eczema and, eventually, a condition called Topical Steroid Withdrawal Syndrome (TSWS). This story is not just a personal account—it serves as a cautionary tale for swimmers and anyone dealing with eczema or considering the use of topical steroids for skin conditions.
In this week’s Champion’s Mojo for Masters Swimmers podcast, I delve deeper into my experience, sharing the full details of my journey. But for now, here is a summary of my story and the lessons learned.
The Beginning: A Simple Skin Issue
Like most swimmers, I spent hours submerged in chlorinated water, which eventually caused eczema around my eyes. Seeking relief, my eye doctor prescribed a small tube of FML, a mild topical steroid ointment, to treat the redness. Initially, the results were miraculous. The inflammation disappeared almost instantly. But this would prove to be just the beginning of a far more complicated and painful journey.
The Dangers of Topical Steroids
Topical steroids have been in use since the 1950s, praised for their ability to treat eczema and other inflammatory skin conditions. However, their long-term effects are not well understood, and their use can come with serious consequences. While they are effective in reducing inflammation and clearing up rashes in the short term, they can also lead to dangerous side effects, including skin damage, adrenal problems, and—most alarmingly—addiction.
As time went on, my eczema spread beyond my eyes to my neck, mouth, and other parts of my body. In an attempt to manage the growing symptoms, I was prescribed increasingly potent steroids—creams, pills, and even injections. Unfortunately, these treatments only masked the problem, and I soon found myself trapped in a cycle. When I stopped using the steroids, my eczema flared up more severely, signaling the onset of Topical Steroid Withdrawal Syndrome.
A Devastating Diagnosis: Topical Steroid Withdrawal Syndrome (TSWS)
Topical Steroid Withdrawal Syndrome (TSWS) is a condition in which the skin becomes addicted to the steroids. When the medication is discontinued, it triggers extreme inflammation, often causing the skin to become red, inflamed, and unbearably itchy. In my case, the withdrawal symptoms were so severe that I was bedridden for nearly two years. My skin was raw, oozing, and excruciatingly painful, while the itch was indescribable—far worse than anything I had ever experienced.
It was a long and painful road to recovery. During this time, I stumbled upon an article about “eyelid dermatitis to red skin syndrome to cure,” which led me to Dr. Marvin Rapaport, a dermatologist who specializes in TSWS. After confirming my diagnosis, Dr. Rapaport guided me through the painful withdrawal process, and gradually, my skin began to heal. Though the journey was grueling, the relief came in time. My eczema flares became less frequent, and my skin slowly started to recover.
A Mission for Change
This personal battle transformed my life. In 2012, I co-founded the International Topical Steroid Awareness Network (ITSAN) with Dr. Rapaport, aiming to raise awareness about TSWS. Since its inception, ITSAN has grown from a small initiative to a respected nonprofit organization. Today, it collaborates with major entities like the American Academy of Dermatology and the National Eczema Association to educate the public about the dangers of topical steroids and TSWS.
According to estimates, approximately 31 million Americans suffer from eczema, a common skin condition characterized by itching and inflammation. Of those, about 10 percent—3 million people—experience TSWS due to the prolonged use of topical steroids. This highlights the importance of awareness and education around safe, effective treatment options.
A Cautionary Tale for Swimmers
Swimmers are especially prone to skin issues because of prolonged exposure to chlorine and other irritants found in pools. While topical steroids may seem like a quick fix for eczema, they are not a permanent solution and can lead to severe long-term consequences. There are safer alternatives for managing eczema, such as identifying and avoiding triggers, using barrier creams, and exploring non-steroidal treatments.
If you or someone you know is struggling with eczema, I urge you to think carefully before resorting to topical steroids. While they may offer short-term relief, the risk of developing TSWS makes them a dangerous option for long-term care. Through awareness and education, we can prevent others from experiencing the nightmare I went through. Let’s ensure that swimming remains a source of health and enjoyment, not pain.
Related topics
