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Getting to Know Glenn Speer

You name a treatment, Glenn has probably tried it.

Can you please tell us a bit about yourself? What are your passions, hobbies, job?

I’m from a town called Montclair in New Jersey. I went to Rutgers University as an undergraduate and studied history. I do historical research. I often work with authors and for authors. My passions are history of course, but also theater. I like baseball. I volunteer with NPF, and that’s terrific. I’ve been doing it over 3 years now. I’m mostly involved in advocacy. I have taken part in Capitol Hill Day.

What type of psoriasis do you have, and how long have you experienced the disease?

I was about 30 at the time. I’m 66 now. It’s been a long haul. After about 5 years of psoriasis, I developed PsA due to the inflammation. I really embody 3 generations of treatments, topicals, infusions, and then the miracle of biologics.

When I went to my dermatologist, Dr. Mark Lebwohl, I was on crutches. We had 10 plus years of treating this disease. I got off the crutches but was still not improving. Then with the advent of biologics, I have been able to see great progress. I can get out and play softball. I never expected to be able to do that. It was a great social activity. It was good to get that kind of exercise.

Do you have PsA or other related diseases (comorbidities)?

I have psoriatic arthritis. It started with psoriasis.

How would you describe your unique experience of having psoriasis?

It is unique to me, but certainly not unique in the broader scope of things. It is certainly evident when I am with my peers at NPF. When we talk about our disease, it is pretty clear that there is overlap.

It really impacted my life in a really severe way. My hands would swell. I’m a writer, editor and researcher. I remember one period of time where the joints were so swollen and painful that I couldn’t really hold a pen or write with any kind of ease. I lost a job. It was nothing personal. It was simply because I couldn’t type. In that business there are strict deadlines, and they couldn’t wait for my inflammation to go down.

Being on crutches, having the pain and discomfort of that. It was a chore to get on a bus, and since I live in New York City and have public transportation I don’t need or have a car here, so that was a challenge.

How does psoriasis impact your life day-to-day?

The difficulties of working at that time, during the worst of it. The challenge of getting around. Pain. With psoriasis, it is a constant itching. Frankly, you bleed because you can’t stop scratching. It’s quite an ordeal. The plaque and scales – I feel like a reptile. I don’t mean to be funny, but I certainly did. You sort of shed your plaques and leave a trail.

What areas of your life are most impacted by psoriasis?

Working. I’ve been better for many years because of the biologics. I’ve had a bad flare up, late spring of this year, but with changes in my treatment I’m doing better now.

For many years, I couldn’t really exercise. I’m not a fitness buff. I don’t exercise a lot. I’m not a runner, but I got to the point where with biologics I was able to play softball and I was able to play golf. It was great to be out there to enjoy the sunshine and fresh air and golf.

I had a horrible time of it. Some have a worse time. I’m fortunate to live in our times with the advances in medications. I was able to do things I wasn’t able to do before.

What do you do to manage and treat your psoriasis?

When I started, 35 years ago, I would get these little injections. Then as psoriasis flared, we had these topicals. I had mixed results. Then there were orals, the NSAIDs, and steroids as well, and a variety of medications. I did not have the best of luck with those either. Maybe I got a little better, but not a breakthrough like the dramatic difference the biologics made. I also had light therapy and infusions. Then the biologics came along. Those have made the revolutionary difference.

As great as they are, they might tale off a little bit after 6 or 7 years in my case. It is not that they don’t work, but they don’t work as effectively, so I have switched a couple times. I don’t know that I had to, but Dr. Lebwohl is very ambitious for me, so we made switches and it has worked well over time. He is a great doctor, and he has helped me tremendously.

I also have a rheumatologist in addition to my dermatologist. Dr. Stephen Paget. I benefit from their cooperative care. They work together. The funny thing is they maybe met once in their long careers, but they share patients, so they are often on the phone with each other. They each have a slightly different perspective, and who benefits from that? I do.

What do you know about psoriasis now that you wish you had known when you were first diagnosed?

What I wish I knew is that there were going to be medications that work as well as these biologics do.

I didn’t know about the National Psoriasis Foundation. Dr. Lebwohl told me about it, and I became a volunteer at his suggestion. It would have been great to know about the support groups. You are laying there, debilitated by the arthritic inflammation, and it would have been good to know about the support groups. They are the kind of thing I might have been reluctant to participate in when I was younger, but looking back, if someone had suggested it and explained how it could help to get support and support others, that would have been something I would like to have done.

What do you want others to know about living with psoriasis?

I have had this since 1985, and here we are in 2021, and I would say, if you are ever going to have this disease, you picked the right time, because there are so many advances in treatment. You have a lot of hope in getting better, functioning better, and living a full life because you have managed your disease.

Never lose hope. It is so easy to get discouraged. But know that there are these treatments, and even people who are treatment resistant have done very well. And you can take some comfort in that. Take advantage of NPF and the community.

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