(BPT) - While some people read comic books to escape reality, illustrator J.G. Jones is using his artwork to illustrate his reality, and the reality of others like him who are living with a group of rare, chronic, progressive blood cancers known as myeloproliferative neoplasms (MPNs).
Since Jones made his debut in the comic book industry in 1994, he has become renowned for his work as a cover artist on a number of well-known comic book series. Now, he is using his talents to bring to life the powerful and personal stories of individuals impacted by MPNs, drawing on his nearly 10-year-long journey living with the disease. The illustrations can be viewed at www.VoicesofMPN.com/RareReflections.
In addition to highlighting the real experiences of patients with MPNs through illustrations, Jones is sharing what he learned on his MPN journey to shine a light on this disease and empower others to play an active role in their disease:
- Advocate for yourself. When dealing with a rare disease like MPNs, it is not uncommon to be misdiagnosed, which is what happened to Jones. During pre-operative bloodwork for surgery in 2009, a doctor noticed his blood counts were elevated. While this could have been a sign of several conditions, the doctor approved him to move forward with the surgery. If you are unsure about your condition, it’s always a good idea to seek a second opinion.
- Educate yourself. Jones approached his MPN in the same way he approaches his paintings: “When I embark on a painting, I start with a sketch, which allows me to work through potential problems before I bring the brush to the canvas. Without doing this work in the upfront, I would be left in the dark, trying to solve problems in the middle of the process and just hoping for the best.” Jones brought this mentality with him when he was diagnosed with polycythemia vera (PV), a type of MPN, by educating himself about the disease and not being afraid to ask questions. “I think this has made the biggest difference in my disease journey. At the end of the day, you are in control of making your own informed decisions that are going to work best for you,” said Jones.
- Listen to your body. One challenging part of this disease is that some symptoms are commonly associated with aging as well as a variety of other illnesses. Before Jones was diagnosed, he dismissed symptoms of lightheadedness and extreme fatigue, chalking them up to keeping late hours and working too hard. “I now know from experience that if your body is trying to tell you something, listen to it,” Jones advised. Since MPNs may worsen over time, it’s especially important to track your symptoms, because doing so can help you and your doctor identify subtle changes in your condition.
- Find support. Living with a rare disease can be isolating because it is easy to feel that no one truly understands what you’re going through. Jones found support and comfort through his wife, Dawn, as well as through friends and support groups online, where he met people going through something similar. He explained that when the “social J.G.” disappeared, he was able to make new friends across the world who he could stay in contact with from the comfort of his own home. “I found the feeling of isolation disappear as I got into a habit of talking to friends in Europe over breakfast, the East Coast in the afternoon and the West Coast at night,” said Jones.