Editor’s note: This article is no longer current, and some information may be out of date. The facts and statistics are based on data that were publicly available at the time of publication.

A new study shows that children and teens with systemic juvenile idiopathic arthritis are susceptible to higher mortality rates than the general population.

Most people don’t even realize that children and young adults can have arthritis — let alone die from it.

More than 300,000 kids, teens, and young adults in the United States live with some form of juvenile arthritis (JA) — and with these diagnoses comes a higher mortality rate than that of the general, healthy population.

A recent study showed that mortality is fairly high in patients with systemic juvenile idiopathic arthritis (JIA). These death rates are the highest among girls, up to 50 times greater than those in a comparable segment of the non-JA population.

Systemic juvenile idiopathic arthritis, once known as (and sometimes still referred to as) juvenile rheumatoid arthritis, is a severe autoimmune form of arthritis that can aggressively attack not only joints but also tissues and organs throughout the body.

As with its adult-onset counterpart, patients with JIA often receive treatment from biologic drugs, immunosuppressants, DMARDs, and sometimes chemotherapy.

Read More: Get the Facts on Juvenile Rheumatoid Arthritis »

The study, out of the United Kingdom, was done by the British Society for Paediatric and Adolescent Rheumatology.

It looked at 693 patients with juvenile idiopathic arthritis, 99 of whom had the systemic subtype of the disease. The average age of these patients was 11 years old, with most of them having the disease for about 4 years at the time of the study.

The standardized mortality ratio for death among all JIA patients was 7.3. This mortality ratio can be converted into a percentage simply by multiplying by 100.

For patients with severe systemic JIA, the standardized mortality ratio was 21.7, substantially higher than the rate of 3.9 among JIA patients with the nonsystemic form of the disease.

Seven females from the study cohort died in the course of follow-ups.
The mortality rate was noticeably higher for female JIA patients than their male counterparts. These female JIA patients also suffered a mortality rate that was 50-fold greater than that of the general population.

These numbers are truly eye-opening.

“These data highlight just how severe the disease can be, which not everyone realizes,” Rebecca Davies, a research assistant at the University of Manchester and an author on the study, said in a statement. “It’s important to have these numbers, with new treatments including biologics and stem-cell transplants being more widely used.”

Read More: New Biologic Drugs Boost Outlook on Juvenile Arthritis »

The potential for serious side effects, complications, and possibly death are all matters of concern for juvenile arthritis patients and parents of young people with juvenile arthritis in its various forms.

“I was diagnosed when I was 3. I am now 37. And I have thought about it probably almost every day. I fully expect to live a shortened life. Sad but true,” said Salyna Kennedy, of Sheridan, Oregon.

Allyah Shaheem of Queensland, Australia, echoes those worries.

“I’m 35, was diagnosed at 6. It’s now in every single joint,” she said. “It’s been the roughest year to date. I refuse to give in, but it gets hard. I am just so tired of fighting all the time. I’ve lived a great life to now so can’t complain. I know there’ll come a day that I wake up and won’t be able to get up again, ever. I’m not afraid of dying, but I’m scared of growing old.”

Parents may worry even more than patients themselves, especially if they are parents of young children.

“I worry about my daughter and myself. Between the increased risk of cancer from the medications and other side effects, it’s frightening,” said Laura Bouslaugh of Sedalia, Missouri. “I hope and pray for a cure so that my daughter can have a better quality of life and so I don’t have to worry about grandchildren living with this. You just have to live your life each day. A scare from my goofed-up immune system had me hospitalized and tested for leukemia. That had me more worried than the JA/RA. It makes you re-evaluate your priorities.”

Both Bouslaugh and her daughter live with autoimmune arthritis.

There are many types of juvenile arthritis, and there are resources to offer assistance and hope to patients like these and their children.

The Arthritis Foundation, EULAR, and the American College of Rheumatology are just a few places that patients and parents can turn to be further educated on these diseases, or to find support and connect with others like themselves.

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