“I’m going to need more blood for our study, is that okay?” I had noticed Dr. Reason Wilken out of the corner of my eye. She works with my dermatologist, Dr. Emanual Maverakis, as a clinical research fellow in the dermatology department at the University of California in Davis. I vaguely recalled having my blood drawn by her at a previous appointment for the atopic dermatitis study.

“I guess you used up all my blood from last time!” I jokingly replied as I gathered my belongings.

Moving to the Sacramento area a couple years ago, I looked forward to the benefits of joining a university medical system. Those benefits include doctors engaged in research who not only prescribe the latest approved medications, but who also participate in their clinical trials. That research has led to amazing discoveries that improve the quality of life of those with skin conditions like psoriasis. I also enjoy the opportunity to give back to medical science after personally gaining from the research undertaken over the decades.

In the summer, my wife, Lori, and I saw Dr. Wilken at the National Psoriasis Foundation‘s (NPF) volunteer conference. She stood by a board in an area where recipients of NPF research grantsshowcase their projects. She told us about sugars called glycans that are involved in autoimmune disorders such as psoriasis. As a patient with limited medical or biological knowledge, I didn’t quite understand her project, but I felt excited that one of my doctors would spend the coming year in research related to psoriasis.

Getting to Know My Medical Researchers

When I go to the dermatology clinic, I see Dr. Maverakis and his fellows or students for minutes at a time. Naturally, we focus on managing my skin conditions, but what I miss is the opportunity to get to know them on a more personal level. So at my fall appointment, I asked Dr. Wilken if I could interview her for an Itch to Beat Psoriasis column to better appreciate her research and background. I had interviewed a couple of celebrities and fellow patients in the past, but never before thought of talking to a medical researcher. She enthusiastically set up an appointment with me.

Dr. Wilken greeted me and Lori as we arrived at the UC Davis dermatology academic office behind the clinic. To my surprise, Dr. Maverakis, Dr. Michelle Cheng (a clinical research fellow), and Andrea Sukhov (a medical student) also joined us in a conference room. As I settled in, I realized this was a great opportunity to get to know Dr. Maverakis and his team as well.

What do these dedicated researchers and clinicians want to know? Dr. Maverakis explained, “Obviously, we want to have a nose to what to study, coming up with a question that needs to be addressed, and then putting a lot of effort to address that question with the hope that answering that question will have relevance to biology and patient care.

We would spend the next hour-and-a-half talking about various topics related to Dr. Maverakis’s contributions in treating immune related disease and working with patients.

Cellular Immunology: It’s All Greek to Me!

During the discussion, the medical terminology used to explain the research sounded like a foreign language to me. But the doctors patiently explained their work to us until we could (mostly) comprehend it.

Dr. Wilken summed up the nature of her NPF grant research for us:

[The grant] is a one-year fellowship award in which you complete a clinical and/or basic science research project related to psoriasis. Ours is focused on sugar molecules on the surface of all the cells and proteins in your body, known as glycans, and characterizing the glycosylation profiles of different serum proteins as well as cell surfaces in patients with psoriasis compared to individuals without the disease. [We hope] to identify glycosylation signatures that are unique to psoriasis and could give us more insight into the disease. These glycan signatures may be helpful in elucidating the disease pathogenesis of psoriasis, as well as using this information as a biomarker to differentiate various sub-types of psoriasis. In the future, we hope this may potentially help clinicians decide which type of treatment a given psoriasis subtype will best respond to.

I still didn’t quite understand the project, so Dr. Maverakis stepped in to respond to my confusion. “It’s good you don’t understand, because nobody understands [glycans],” he said. “I didn’t even know that these molecules existed just a couple of years ago, because we’re not taught about them in our science curriculum. Not at all, actually. When we take our crystal structures of proteins, they cut the glycans off — they cut the sugars off — so you can get the pretty crystal structure. You don’t even see them in the pictures of the different proteins you’re looking at.”

The research on glycans began when Dr. Maverakis finished his residency at UC Davis. He started a small lab with no initial funding, wanting to study T-cells and autoimmunity for which he’d already received awards for previous research. During his studies at Harvard Medical School and the La Jolla Institute for Allergy and Immunology (a premier site for immunology in the country), he enjoyed the rich collaborative environment of those programs. But with his small lab, he found himself practically by himself. As a cellular immunologist, he thought he could explore opportunities to work with other disciplines at UC Davis.

One day he was treating a patient who happened to be a chemistry professor, Dr. Carlito Lebrilla. He later discovered Dr. Lebrilla’s expertise in detecting glycans, and thus began collaborative work with the chemist to research glycans and autoimmunity. Dr. Lebrilla designed and built a mass spectrometer to detect the glycans and later fine-tuned million-dollar commercial mass spectrometers to do the same. Those sugar structures potentially hold the information needed to characterize, diagnose, and treat autoimmune disorders.

Potential for Precise Psoriasis Treatment

This year’s project would build upon last year’s project, where they found 73 unique signatures from 32 psoriasis patients. The question, though, is whether those glycan signatures on immune cells uniquely point to psoriasis or could also be associated with other disorders.

As a patient, I wanted to explore the possible practical application of this glycan research for the future. I still don’t completely understand  the science behind the research, but I can understand the need for a more precise treatment approach. Dr. Maverakis’s vision sounded incredible to me:

We want to be able to say this patient should be started on this medication, because these medications are expensive and take a while to kick in. And there’s always a guessing game: I put you on this medication and you’re doing pretty well, but would you do better on another medication? We don’t know unless we cycle you through all the medications. Starting and stopping these medications is not a good strategy, because they don’t work as well as they did initially [if you stop them for a time]. Having a test that says you have this kind of psoriasis, and whatever else you need to worry about, would be nice.

A couple of weeks later, Drs. Maverakis and Wilken showed us around the Dr. Maverakis Research Lab in Sacramento. The small lab with one station has become a suite of stations and rooms housing equipment tuned to explore future medical discoveries. Special thanks to Dr. Maverakis and his coworkers for taking the time to give a behind-the-scenes look at a working immunology lab!

What Doctors Want Psoriasis Patients to Know

Not too long ago I wrote about what patients want their doctors to know, but were afraid to ask. Here I asked the doctors what they would want psoriasis patients to know. I could relate to Dr. Wilken’s thoughts:

It’s hard to predict the responses [to medications]. Just because a therapy works for one person doesn’t mean it will work for everyone. Clinicians should prepare [patients] for the fact that we may put you on a medication, it may work really well, but after a certain period of time it may stop working. We may have to look again at our medication arsenal and see what else we could try. It’s important for patients to have a realistic picture of the natural history of this disease and to prepare them for a flexible treatment plan. Psoriasis is a chronic disease and requires a lot of communication between doctors and patients to achieve the best outcome.

The message I took away as a patient is to temper expectations. Psoriasis often is not a take-a-pill-or-shot-and-go-away kind of disease: It takes a flexible attitude and a willingness to work closely with your doctor to manage the condition in the long term.

Near the end of the interview, Dr. Maverakis voiced what I’ve felt for decades: “The chronicity of the disease is the hardest to take. When you explain to [patients] that they take this and they will be clear, then they think that’s great. But then when they find out they will never be cured, that’s hard to take — that you will have a disease that will never be cured.”

With the help of researchers such as those at the UC Davis School of Medicine partnering with patient groups such as the NPF, I feel more confident that a cure will come sooner than later. I’m even more inspired to make my contribution to the cause as a patient advocate after spending time with the research team — even if it means contributing a few more vials of blood!

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