Comic Book Artist Raises Awareness of MPNs Through Portraits

Comic Book Artist Raises Awareness of MPNs Through Portraits

Comics don’t usually lend themselves to cancer. Yet illustrator Jeffrey Glen Jones, professionally known as J.G. Jones, is using the skill and talents he normally unleashes to create super assassins and alien villains to tell the stories of those impacted by myeloproliferative neoplasms (MPNs).

Jones, 58, best known for his work on comic titles such as “Wanted” and “Final Crisis,” was diagnosed with an MPN in 2009. MPNs are a group of rare, chronic blood cancers, in which the body produces too many white or red blood cells or platelets.

He has partnered with pharmaceutical company Incyte to create “Rare Reflections: MPNs Unmasked,” a campaign to raise awareness of MPNs. “Rare Reflections” features the powerful and personal stories of individuals with MPNs through a series of portraits illustrated by Jones.

Patient Power spoke with Jones, who resides in Philadelphia, about his diagnosis, treatment journey and his work on “Rare Reflections.”

Note: The interview has been edited for length and brevity.

Can you tell me about your diagnosis? What were the signs that something wasn’t quite right?

About 12 years ago, I started having a bunch of symptoms where I would have extreme fatigue. I would be passing out at my drawing table or falling asleep and waking up hours later. It was just becoming a real problem. But I didn’t get diagnosed until a couple of years after that. I was feeling generally terrible and went for a routine physical and it took a really long time to get a vial of blood out, which was sort of the first sign that something was wrong with my blood. That’s when I was sent to a specialist, a hematologist, who did a bone marrow biopsy, and I got my diagnosis of polycythemia vera.

What were your thoughts and feelings at that time?

It was mostly relief. I had a feeling that something was really, really off. It was kind of scary, and I was sort of keeping it to myself. I had missed a few deadlines on really important projects, which is not a good thing to do in my industry, so just knowing is the first step and it was a big relief because now I could figure out what to do.

Where did you go to find resources and support?

It was all brand new for me. I started reading and talking to my doctor and all of the classic symptoms were what I had. So, I was like, ‘Oh Ok. This all makes sense now.’ I did research online and I also went to the patient conference in New York (the International Congress on Myeloproliferative Neoplasms) every couple of years and learned a whole lot there. The first person I met after my diagnosis was — I found what was supposed to be a support group. My wife and I went, and it was one woman with a little plate of cookies. That was it. I said, ‘I think I need to get some better information’ at that point.

How did you cope with your diagnosis and treatment?

Just dust yourself and go on. The treatments definitely got my symptoms under control, with the exception of the pruritus, which was really horrific and never went away, especially when I would shower and get that horrible horrible itching. It sounds like nothing until you’ve had it and you’re on the floor curled up in a ball for an hour because of the itching. But the symptoms were very manageable for years until it transformed into myelofibrosis.

How was that diagnosed, by the way?

I went in for a phlebotomy, and my numbers had started to crash—instead of going up, were going down. Basically, I had so much scarring in my marrow by that point that it had transitioned into myelofibrosis. The fatigue came back very strongly, that was the first major symptom, and when I switched treatments and came off of the phlebotomies and hydroxyurea. I pretty much got to experience the disease uncovered because the treatment I was taking was not working. So I just had horrible, horrible symptoms — the night sweats, the hot and cold, bone pain, nothing was really working to treat it at that time. I started Interferon, and it did virtually nothing. I switched over to taking Jakafi (made by Incyte). For me, it was like a miracle. I was pretty well controlled, but my next bone marrow biopsy showed that while symptoms were being controlled my bone marrow was still progressing. That’s when I made the decision to go for the transplant, which I had about two years ago.

How did you end up partnering with Incyte?

I had done an interview before I went in for my transplant so the people in my comic world would know why I was disappearing for a while. Someone at Incyte spotted the article and they got in touch and asked if I would be interested in using my artistic abilities to work on the “Voices of MPN” series. (“Rare Reflections” is part of the series.”)

What made you decide to get involved?

My wife and I talked about it a lot. I felt like it was a wasted opportunity if I didn’t share. A couple of people in my industry had asked me if I wanted to do a graphic novel. ‘No, I don’t really want to write about my disease journey like that.’ I would be interested in talking to other patients and sharing their stories because I work telling stories all day. I am more interested in other people’s stories than I am my own.

After your initial diagnosis, did you ever see yourself becoming an advocate?

No. I’m always in my own head busy with my own stuff and not really interested in being the sick guy, but I got to talking to a lot of other people that I met. This suite of diseases is so poorly known outside of people who have them or doctors who work in the field and I started to discover that a lot of people first got their diagnosis when something else happened, a stroke, a heart attack, something like that. So, they had no clue what these diseases were. I thought I could use my skills and talents to talk about what these kind of orphan diseases are. Maybe open some eyes and help some other person to recognize what’s going on with them.

What have you learned from working on “Rare Reflections”?

I think what I have really learned is that there is a lot of optimism out there. I think before I got involved, I had this idea that it was going to be sad and depressing talking to other people about their disease. We end up talking less about their disease and more about their life. Treat the disease, so they can continue with their interest and what they like to do. Everyone I have spoken to is completely different, but they all have that will and drive to continue and to live a full life.

What words of hope do you have for someone who has been recently diagnosed with an MPN?

Do your research. It’s going to be OK. Make sure you have a doctor you can talk to who you can trust. It’s really important to have a medical care team that understands MPNs. I interview a lot of people who are not so lucky with their first round of doctors because maybe the doctors are general practitioners and they don’t really understand the ins and outs of the MPNs. Once you find somebody who is a specialist in those — definitely, it is a suite of diseases that you can manage and live with.

Watch J.G. Jones’ story, read the patient stories and view the illustrations.