Living with Inverse Psoriasis: Terry's Story
Terry di Paolo, a 38-year-old event conference producer in New York City, knows well the challenge of living with inverse psoriasis. He was diagnosed just over two years ago.
â€œI had had a rash in my groin area for about two months and I thought it was a fungal infection,â€ says di Paolo. â€œI used an over-the-counter medicine for fungal infections and it had some effect, but it never went away.â€ Di Paolo saw a general practitioner who said it was a fungal infection, but then saw a dermatologist who diagnosed it as psoriasis.
Di Paoloâ€™s initial reaction to the diagnosis was skepticism. â€œI didnâ€™t trust the diagnosis on some level,â€ he says. â€œI attributed the rash to â€˜I didnâ€™t drink enough water.â€™ Plus the [hydrocortisone] Locoid steroid cream the doctor prescribed was very expensive and didnâ€™t clear it up.â€
Not wanting to believe the first psoriasis diagnosis, di Paolo saw two more dermatologists. All agreed that it was indeed psoriasis, and all gave him different creams for psoriasis treatment. â€œWhen I went to see each doctor, I didnâ€™t tell them about the psoriasis diagnosis â€” I just showed them the rash. But they each looked at my nails â€” and told me I have it.â€
Inverse psoriasis commonly affects areas of the body where there are skin folds, such as the groin, the armpits, and in women, under the breasts â€” areas that are sensitive, prone to yeast or fungal infections, and susceptible to irritation from rubbing and sweating. Shiny, smooth lesions are the typical psoriasis symptom. Often, doctors may combine psoriasis medication options such as hydrocortisone with anti-fungal or anti-yeast medications as part of psoriasis symptom management.
Putting Together the Puzzle of Inverse Psoriasis
Once he accepted the diagnosis, di Paolo said it was like a mystery was solved for him and his family. â€œIâ€™ve always had dry skin spots on my fingertips and around my eyes and ears,â€ he says. â€œMy father used to pick up things like udder cream for me to try. The diagnosis helped us realize that it was all related. There was a big â€˜ah-haâ€™ moment on my familyâ€™s part and on my part.â€
While di Paolo has his familyâ€™s support, the location of the inverse psoriasis flares â€” his groin â€” makes psoriasis treatment a bit more private than for other forms of psoriasis. It also makes it harder for di Paolo to observe his psoriasis symptoms. â€œI take a camera and document my psoriasis,â€ says di Paolo. â€œHow else can I see whatâ€™s going on?â€
The Challenges of Managing Inverse Psoriasis
For Terry di Paolo, psoriasis symptom management is a daily challenge. â€œWith inverse psoriasis, fungal infection is very common,â€ he says. â€œI realized that I was fighting one or the other.â€ And having the inverse psoriasis in his groin posed particular challenges. â€œItâ€™s debilitating for me just because of where it is,â€ says di Paolo. â€œItâ€™s a little hidden disease.â€
At times, his psoriasis symptoms can make simple tasks, such as walking, difficult. â€œI was a runner, but there are times when I canâ€™t walk down the street,â€ says di Paolo. â€œMy scrotum and groin can be covered in red bumps that are deeply itchy and painful. The skin is cracked and bleeding.â€ Another challenge is how to tell people about a serious health condition when you look healthy.
The secret to living with inverse psoriasis, says di Paolo, is to be your own advocate. He found a successful combination of psoriasis medications that are working to manage his inverse psoriasis, and he is personally researching ways to prevent his flare-ups. â€œI donâ€™t expect there to be a cure,â€ says di Paolo. â€œIf A and B donâ€™t work, try C. Creating a toolkit of options for yourself is a good idea.â€
One thing he knows for sure: He must constantly moisturize his skin. He missed one day and started getting a flare. Another time, he cut his finger and the skin around the cut developed psoriasis for two months.
To handle his daily challenge of keeping his inverse psoriasis in check, di Paolo uses a combination of an over-the-counter anti-fungal and a hydrocortisone cream as well as moisturizers to keep his skin healthy. Heâ€™s also learned how to handle bad flares. â€œAt its worst, I just donâ€™t go [on a walk] or I may use Vaseline,â€ says di Paolo. Part of di Paoloâ€™s psoriasis symptom management also includes taking nutritional supplements. â€œI do vitamin therapy: zinc, B3, B12, C, selenium, and omega-3,â€ says di Paolo.
And though he cannot be as active as he used to be, he still tries to do what he can when he is not having flares. â€œHaving it right where it is makes it harder to run like I used to,â€ says di Paolo, â€œbut I recently did a five-mile race.â€
Finding Psoriasis Support Online
Di Paolo has found that reading about other people who have psoriasis is extremely helpful. â€œI felt like it was an emotional drain not being able to tell people about my inverse psoriasis,â€ says di Paolo. â€œThen I found the National Psoriasis Foundation Web site and its useful information. I wouldnâ€™t have known what to do or how to manage my condition. I could read about what things had worked. And for the first time, I met people who had what I had and knew what I was going through.â€
Finding others with inverse psoriasis has helped di Paolo feel less isolated. â€œItâ€™s lonely. Itâ€™s emotionally wearing on you,â€ he says. â€œThe online community has been the one thing that broke through that.â€
What di Paolo Wishes People Knew About Inverse Psoriasis
Read Howard Changâ€™s Psoriasis Blog.
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