Editor’s note: In honor of Men’s Health Month, NPF is telling stories of men who are living with psoriatic disease. Here, we share Tom’s experiences accessing his psoriasis medication while living abroad – and how NPF helped him get back on treatment.
When you’re a young adult, living with a chronic disease like psoriasis has its ups and downs. Tom Jump, a 27-year-old who has lived with psoriasis for 10 years, was responding to Stelara (ustekinumab). His disease was under control, and his professional and personal lives were going well when he seized an opportunity to transfer to the European headquarters of an international advertising agency.
“I chose to relocate from Chicago to Germany to be closer to my girlfriend,” said Tom. “Overall, it’s been a great experience being abroad. I’ve been able to see so much of the world, meet people with diverse backgrounds, and learn new languages and cultures.”
Yet, when it came to accessing his psoriasis treatment, things took a turn for the worse. For two years, Tom was unable to access his regular treatment, which had been successful when he was living in the U.S.
After waiting months to see a health care provider in Germany, Tom was given “ineffective” creams and medications that failed to work. “In that time, my condition worsened to the most severe coverage in my entire life,” he recalled.
Tom’s mother, Cindy Jump, saw psoriasis take a heavy toll on her son both physically and emotionally.
“Tom’s psoriasis was worse than it had ever been,” said Cindy. “After being successfully treated for years in the U.S., he knew what worked and what didn’t. But he suffered needlessly month after month. Although he never outwardly complained, it was absolutely heartbreaking knowing the physical and mental anguish he was going through.”
NPF helps the Jumps find a solution
Unsure what to do, Cindy reached out to NPF’s Patient Navigation Center out of “complete desperation.” She wrote an email explaining the situation, “hoping that someone might have some advice that would help Tom.” The next morning, she received a reply from Patient Navigator Sara Conyers, who “quickly became the shining light that guided [her] through some very difficult times.”
Sara helped Tom and Cindy navigate the German health care system, contacting the German branch of the company that manufactures Tom’s medication. Ultimately, this company was able to provide a list of dermatologists in Frankfurt, Germany who prescribed his treatment. With Sara’s encouragement, Tom was able to get an appointment at a university hospital, where he finally received the appropriate prescription.
“Throughout this bumpy process, Sara was a constant source of inspiration and strength and an invaluable resource navigating this difficult and frustrating situation,” said Cindy. “We went from feeling totally defeated to feeling hopeful and empowered. Just knowing that there was someone out there who truly cared about what my son was going through meant the world to me.”
Life back on treatment: Tackling a Spartan race and moving to Amsterdam
A few months after getting back on his treatment, Tom and his girlfriend, Karin, participated in a Spartan race in her hometown in Austria. “After going through what I had to do to access my psoriasis treatment, a Spartan race was easy,” he said.
Now, after almost three years in Germany, Tom has moved to Amsterdam to take on a new job and be even closer to his girlfriend. “My German dermatologist has been in contact with my new doctor here in the Netherlands, who is well versed with my psoriasis treatment. I should be getting back on my medication once I get my Dutch health insurance set up.”
Throughout this experience, both Tom and Cindy have learned valuable lessons.
“Psoriasis is an extremely misunderstood disease,” said Cindy. “As parents, it has been important for us to keep asking questions, keep constantly informed and keep fighting for the very best for our son. Tom has never complained or let psoriasis prevent him from living his life, but it has not been an easy road.”
As for Tom’s advice: “Never settle for a treatment that doesn’t work. Never stop asking questions about what else you can do to improve your condition – whether it’s a medication or other lifestyle changes. And never let this disease stop you from living your life the way you want to, never let it control you and keep you from being happy. While things can seem tough and hopeless, there is always a solution.”
Get help finding a solution
If you’re struggling with an issue related to psoriasis and psoriatic arthritis, NPF can help. Whether you’re living with psoriatic disease or care about someone who’s impacted, our Patient Navigation Center will work with you to find specialists, access treatments, deal with insurance issues and more.
Driving Discovery, Creating Community
This year, we’re celebrating 50 years of driving efforts to cure psoriatic disease and improve the lives of those affected. See how far we’ve come with this timeline of NPF’s history. But there’s still plenty to do, and we can’t do it without you! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funding to promote research into better treatments and a cure by joining Team NPF, where you can walk, run, cycle, play bingo or even create your own DIY event. Contact our Patient Navigation Center for free, personalized support for living a healthier life with psoriatic disease. And keep the National Psoriasis Foundation going strong by making a donation today! Together, we will find a cure.