How My Psoriasis Journey Continues to Evolve – Everyday Health (blog)

By Howard Chang

No, its not an actual cornfield. Howard Chang checks out an exhibitor booth for skincare products at this years AAD meeting.

I attended the annualAmerican Academy of Dermatology (AAD) meeting in Orlando, Florida, earlier this month. AsI approachedthe Orange County Convention Center,ahuge AAD logo over the entryway stairs signified thatI had arrived. I felt both excited and nervous at the prospect of joining thousands of physicians and hundreds of exhibitors at a medical meeting focused on skin and, in my case, psoriasis.

My journey to AAD started decades earlier, when I was first diagnosed with psoriasis as a child. Those characteristic red psoriatic lesions made their first appearance after I slept in a new, unwashed sleeping bag. I figured the chemicals in the bag triggered the first rashes. Up to that moment, my family never heard of psoriasis. Only months later, I would be the subject of a dozen physicians and medical students at the UCSF Dermatology department. They made the life-changing diagnosis: psoriasis.

I entered the AAD Exhibit Hall thinking about that scared child who would come to learn much about living with a severe skin disease. [Disclaimer: While JanssenGlobal Services sponsored me to attend the AAD meeting , all views and thoughts from my attending the meeting are all my own.]

The top physicians reported their newest research findings here in the halls of the conference, including some who saw me as a child. Companies revealed their latest treatments, promising a better future for patients. Their work continues to impact my daily life as I switch to new treatments and therapies over the years.

As a psoriasis patient, I never knew what happened behind the scenes.

Attending the conference as a psoriasis patient advocate gave me an opportunity of a lifetime: to receive updates on state-of-the-art treatments and hear what doctors and the dermatology industry heard for the first time. I naturally focused on psoriasis, attending sessions like Translating Evidence into Practice: Psoriasis Guidelines and Comorbidities in Psoriasis: What You Need to Know, and scrutinizing scientific posters presenting research results for biologic medications in psoriasis treatment.

My lasting impression from AAD is the tremendous amount of effort and focus on psoriasis research and treatments. Just in my lifetime, treatments went from topical creams, tar applications, and phototherapy to biologics that block inflammation where it begins on the molecular level. But all the medical language, scientific reports, and pharmaceutical industry booths made me wonder if I landed in the wrong place.

What kind of positive impact could attending a medical conference have on a psoriasis patient like me? Here are three things that continue to influence the way I approach managing psoriasis effectively.

At the conference, I saw dermatology news made before my eyes. Researchers presented their latest findings in scientific sessions and short presentations in the exhibit hall. I learned about the latest medications and treatments, including ones I hope to try soon.

Of course, not everyone with psoriasis will attend medical meetings. At the same time, patients should understand the importance of staying educated about their medical conditions.Thanks to the Internet, anyone can learn about the latest research and treatments, psoriasis and otherwise. For example, the AAD produced news reports from the conference that you can access here.

Another great way to keep up to date on whats happening in the dermatology/psoriasis world is to set-up simple web searches. Each evening I receive a Google alert via email with links to todays psoriasis articles. If you dont want those alerts in your emails, a simple search engine query with any terms related to psoriasis yields similar results. Certain organizations, such as the National Psoriasis Foundation, update relevant news to patients on their sites too. If Im interested in an article or report I need a subscription to read, I ask my dermatologist who can print those for me at my clinic visit.

As patients take more active roles in their own care, they ultimately benefit from preparation before appointments. Armed with the latest information, the empowered patient goes to appointments with their healthcare providers knowing their options. They actively collaborate in treatment decision-making as partners with their physicians.

A clear message I heard from presenters to fellow dermatologists is to take time to treat the whole patient and get to know their history. The list of conditions associated with psoriasis continues to grow, including cardiovascular disease, diabetes, obesity, arthritis, and liver disease, among other things. No longer should anyone consider psoriasis as just a rash on the skin or a minor cosmetic concern as compared to other more serious conditions.

Inflammation affects the whole body. Dr. Nehal Mehta of the National Institutes of Health, a cardiologist, presented his research on the link between psoriasis and inflammation. (You can see his webcast Inflammation and psoriasis: Seeing is Believing at the National Psoriasis Foundation website.) Recent studies point to the possibility of cardiovascular inflammation being independently associated with psoriasis. In fact, reducing psoriasis by one-third coincided witha six percent reduction in cardiovascular inflammation, the equivalent of taking low-dose statin medication.

Another presenter would not go so far as to say that reducing psoriasis would reduce cardiovascular risk. But with the current data, the clear message pointed to the importance of monitoring not just skin symptoms. He suggested all psoriasis patients be screened for cardiovascular risk factors starting at age eighteen and every five years thereafter. Those 40 and over should be screened annually.

I learned more about how my different conditions might impact my overall health. This knowledge tells doctors to look past the skin. But it also tells those with psoriasis to do the same. Besides making sure my doctors monitor health risk factors, I immediately started making lifestyle changes such as choosing the salad when eating out, restarting my exercise program, and making sure I get enough sleep.

I told my dermatologist about going to the AAD conference, which he wholeheartedly supported. During my trip home from Orlando, we messaged each other about a scientific poster presented by his resident and my next treatment.

I expect my newfound knowledge to positively affect the partnership we have in treating my psoriasis and atopic dermatitis. The Food and Drug Administration is currently evaluating one new medication my dermatologist and I discussed a couple of months ago. At one presentation, a researcher answered the exact question I had posed to my doctor. In my next appointment, I hope to share what I learned, which should help steer the direction of my futuretreatment.

Meetings like these partly exist for medical professionals to further their education. Some are experts in an aspect of their field, which may or may not be psoriasis. But since I have psoriasis, I know tools exist for me to be an expert on my body and condition. AAD empowered me to continue to advocate for myself and my care.

Patients no longer need to feel left in the dark when it comes to their own treatment. While those with psoriasis should find healthcare providers they trust, providing valuable input to them goes a long way toward finding successful solutions.

My final takeaway from AAD is to seriously consider the risk of not treating psoriasis effectively. Over the years, Ive grown more cautious about aggressively treating with the newest medications. I feared the risks and all those warnings you read on the labels. I still wont necessarily demand the latest and hyped injection or pill. But I certainly will explore every option, including continuing in those lifestyle changes, if it means slowing down psoriasiss impact on my quality of life and longevity.

I didnt need to go to AAD to know that psoriasis puts up quite a fight. Yet, the arsenal available to those who live with psoriasis to fight back continues to grow too. If you add in a stubborn desire to live as fully and productively as possible, then psoriasis doesnt stand a chance.

For more of my thoughts on attending AAD 2017, see my new website PsoHoward.

Last Updated: 3/22/2017

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How My Psoriasis Journey Continues to Evolve - Everyday Health (blog)