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My Psoriasis Story

Long time volunteer and board member Richard Seiden shares memories from 50 years of living with psoriatic disease.

I have lived with psoriasis and psoriatic arthritis (PsA) for 50 years, but it is something I have; it does not define who I am. You can look at my story as a study in the progression of this disease, with an emphasis in my case, on progress and temporary relief. I have developed an attitude of determination in coping with the pitfalls – looking for positivity, educating myself and others about psoriasis, and advocating for finding the best treatments for all of us. In some ways, it has been a partnership of sorts with psoriatic disease. As a result, I am able to do what I want within limits, and despite a number of impactful surgeries, I walk with purpose through life without a wheelchair.

A Challenge Unfolds

During law school in 1972, I noticed an abundance of scaling on my scalp. Dandruff shampoos did not alleviate the problem, so I went to a dermatologist who diagnosed it as scalp psoriasis. At the time, I was prescribed a coal tar shampoo, which triggered a redness on my forehead, so I then tried the Grenz ray machine. Both of these treatment options are still around today, but we have seen incredible progress in the options available to us now.

As the disease spread beyond the scalp, the treadmill of treatments continued. I tried topical ointments, tar baths, and phototherapy performed at my health care provider office. At that time, psoriasis was considered a skin condition, when in fact we know today that it is a chronic immune-mediated disease associated with inflammation throughout the body. The misunderstandings and misconceptions led to a number of additional challenges and stigmas for those impacted by psoriasis and PsA.

At the time of my diagnosis, I remember that topical treatment options were messy, greasy, smelly, inconvenient, time-consuming, and frankly, hit or miss. These were merely localized spot treatments for what came to be known as a systemic disease. All the while, those of us with psoriasis and those who cared for us were left to try a wide variety of treatments. We were desperate for relief. At one point, a dermatologist actually gave me multiple intralesional injections of cortisone. I looked like a pincushion, but luckily my clothing covered my body.

A tennis injury to my knee in 1976 led me to an orthopedic surgeon and then a rheumatologist, who reviewed x-rays and noticed psoriasis on my arms, so he diagnosed my problem as PsA. I did not realize the potential severity of the disease and its long-term implications for me.

A Positive Force: The National Psoriasis Foundation Effect

In the early 1980s at a dermatologist office, I read a National Psoriasis Foundation (NPF) newsletter. Here was a support group dedicated to my needs. I immediately signed up for membership. The information provided by NPF was a major educational supplement to what I had learned up to that point, making me a better partner in my own care management. This enabled heightened self-awareness. NPF helps those with psoriasis to navigate and manage their disease and their lives. Knowledge was the key. This allowed me to share my newfound knowledge with other people with psoriatic disease as a speaker at NPF regional education programs and community events.

In 2003, a notice in the NPF newsletter advertised a vacancy on the Board of Trustees (now called the Board of Directors). I applied and was elected, so I flew to Portland, Oregon to meet the leadership and staff. Once there, I realized how committed the organization was to research and education, and how much it had accomplished for the community. I immediately increased my level of giving and signed up for committee participation at the national and local levels.

Back to my personal history, in the late 1990s, the advent of biologics that could be used to treat psoriasis and PsA gave me a chance to control the inflammation of psoriatic disease and potentially prevent further permanent damage to the joints. Unfortunately, much of the major joint damage had already occurred before 1998.

Surgically, I had double knee replacements in 1999, a right hip replacement in 2003, shoulder replacements in 2015 and 2017, and a left hip replacement in 2018. Today, this “Bionic Man,” – a name coined by my family – gets around quite well, thanks to excellent providers, surgeons, physical therapists, a loving family, determination, and of course, going right to the source: NPF.

Where We Are Today

For the last three years, I have been taking a biologic treatment that has completely cleared my psoriasis, and according to my provider, my replaced joints are no longer considered “active disease” that can be treated by biologic drugs. Hopefully, the remaining joints will not further deteriorate.

During my time as a volunteer with NPF, serving as chair, vice chair, and secretary of the board, I have been able to participate in some groundbreaking new initiatives, like the push by NPF to fund research to identify a PsA diagnostic tool. This would allow for accurate, timely diagnosis that might help prevent permanent joint damage.

I was also the sole patient representative at a National Institute of Arthritis and Musculoskeletal and Skin Diseases roundtable discussion in Bethesda, Maryland addressing gaps and opportunities in PsA research, which included major thought leaders from the field. Those findings contributed to the adoption of new PsA treatment guidelines by NPF and the American College of Rheumatology.

During my fourteen years of leadership service, I have participated and witnessed NPF grow into a true leader among health and research nonprofits. Today, NPF works proactively to address gaps in research while providing free support to almost 20,000 people each year through the Patient Navigation Center.

I think a positive attitude, patience while searching for treatments that work, advocating for myself and others, and an understanding that I am more than my disease are essential for living my best life with psoriasis.

What I’ve Learned About Psoriasis

  • Early diagnosis and early treatment can help to mitigate the impacts of psoriasis.
  • There are others who have a similar diagnosis to me, but no two people are the same. Treatments must be tailored for each individual.
  • Only take the advice of a trusted health care provider and do not self-diagnose and treat.
  • Effective treatment requires patience and perseverance. No treatment will work immediately, so you must give it a chance.
  • Newly developed treatments are offering great hope to all those impacted.
  • I am my own advocate for health as I coordinate care among the specialists I need.
  • I can rely on the NPF website, emails, articles, and podcasts for accurate, timely information.
  • I will not allow psoriasis or PsA to control my life – it is what I have, not who I am.

 

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Rick Seiden

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