Your Transition Toolkit

For Kids, Teens, and Young Adults

Life is full of changes….some are small while others are REALLY BIG.
Bigger changes are often called TRANSITIONS.

Examples of transitions are: starting or changing schools, graduating from high school, moving away from home, getting a job, moving from one place to another, changing doctors, getting married, or having children.

One of life’s most complicated transitions is moving through the teen years into adulthood. Challenges include: figuring out how to make your own decisions and be your own person, learning to manage your health, and deciding how you want to live and what you want to do as an adult. If you are reading this, YOU are getting ready to become an adult.

Transition to adulthood is also a very exciting time! You will have more chances to be independent, try new things, meet new people, and become your own person! It can also be scary because of so many changes and new responsibilities.

There are many important questions to ask as you prepare for transition:

  • What do I want to do after high school?

  • How will I stay healthy to have the life I want?

  • How will I find adult doctors?

  • How will I care for my condition on my own?

The purpose of this toolkit is to provide you with a travel guide to help you plan this exciting “road trip” or “adventure” called transition to adulthood. It will help teach you the skills you need to become independent and reach your goals. It will also help you learn about resources that
are available to help you.

Life is always an adventure, and we wish you the best!

–The Arthritis Foundation Transition Team

Your Transition Timeline

Life Area Age 12-15 Age 16 years & up
  • Ask questions, talk about your needs and how you feel about your condition with your parents and health-care providers.

  • Find people you can trust to help you learn to manage your condition.

  • Find role models you can relate to and look up to.

  • Practice budgeting and banking skills.

  • Think of yourself as a role model and a mentor to younger children.

  • Learn about the impact of your condition on sexual health and reproduction (for example effect of disease in pregnancy).

  • Increase your knowledge of your condition and understand reasons for tests, procedures, and medications.

  • Find people you can trust to help you learn to manage your condition.

  • Ask for private time with your health-care provider for part of your visit.

  • Prepare questions and concerns you want to discuss.

  • Talk with your health-care team about birth control, drugs, alcohol, and changes related to your condition as you grow.

  • Discuss your future care in the adult health system.

  • Talk with your health-care team about birth control, drugs, alcohol, and changes related to your condition as you grow.

  • Discuss your future care in the adult health system.

  • Create or update your own Medical Summary.

  • Be able to explain your condition and special health-care needs to others.

  • Make a plan for how your medication and treatments will be paid for in the future, as some insurance plans or payment programs end at age 18 or 21

  • Prepare questions and concerns you want to discuss.

  • Find an adult rheumatologist and adult primary care.

  • Connect with others who have already made the transition to seeing adult health-care providers.

  • Know your prognosis and future care plans.

  • Update your medical summary.

  • Set up your own routines, such as taking medications and telling your parents when you are running out.

  • Keep track of your prescriptions, test results, procedures, and appointments with help from your parents and your health-care team.

  • Learn about your community and find resources related to your condition.

  • Take charge of preparing and taking any medications or treatments on your own.

  • Plan ahead to fit your daily care into your schedule so you can hang out with friends, participate in sports and clubs, and attend school.

  • Keep track of your appointments with a calendar or your cell phone.

  • Practice explaining your medical condition to teachers, camp counselors, and nurses who need to know.

  • Develop a 3-Sentence Summary of your condition.

  • Talk about career interests and begin to set goals for after high school.

  • Take part in meetings about your education.

  • Get to know your school guidance counselor.

  • Look for volunteer or part-time job opportunities.

  • Go for career counseling, shadow someone at their job, attend a job fair.

  • Speak to your health-care team about scholarships that may be available through your program.

  • Going to college? Register with the Disability Office on campus.

  • Join teams and clubs at school or get involved in activities such as camps and community programs.

  • Think about with whom you would like to share the details of your condition.

  • Hang out with friends.

  • Learn to plan ahead for being away from home by preparing any medications you might need to take with you.

  • Look for young adult support groups in the community.

  • Continue to participate in activities at school and in your community.

  • Get involved with your local Arthritis Foundation office. Many offices have camps or education days you can get involved with and meet others just like you while helping children with arthritis and related rheumatic diseases.

  • If you are dating, decide when you are ready to talk about your health condition with your partner.

What is Juvenile Idiopathic Arthritis?

Considered the most common form of arthritis, juvenile idiopathic arthritis (JIA) begins before age 16 and involves swelling in one or more joints lasting at least six weeks. JIA includes several types of arthritis previously known as JRA. In recent years, though, researchers have developed a more sophisticated understanding of the differences between specific types of arthritis, and the terminology and definition of the disease has shifted.

One reason for this shift is that JRA is not – as the term implies – simply a pint-sized replica of the condition that affects adults. In fact, it’s believed that only about 10 percent of children have a disease that closely mirrors rheumatoid arthritis in adults. Researchers also concluded that the JRA category was drawn too narrowly and should include some related diagnoses, such as ankylosing spondylitis.

JIA may include a variety of symptoms, such as muscle and soft tissue tightening, bone erosion, joint misalignment and changes in growth patterns. Not all symptoms are shared by all children with the disease. Moreover, the symptoms of JIA can change from day to day.

Diagnosis of JIA is based on physical exam as well as lab tests and medical history. In addition to watching for symptoms for at least six weeks, your child’s doctor will wait to see how her symptoms unfold during the first six months after onset. The number of joints affected during those first six months determines the diagnosis. In addition, the JIA criteria also rely on other results, such as those from the rheumatoid factor blood test, to help further diagnose children within the subsets of JIA.

JIA Subsets

There are nine types of juvenile idiopathic arthritis. Following are descriptions of each subset:

Oligoarthritis: Formerly known as pauciarticular this type, is diagnosed when four or fewer joints – “pauci” and “oligo” mean “few” – are involved within the first six months. It’s particularly common in Caucasian children and accounts for about 40 percent of new JIA cases in that group. Girls are more likely to be diagnosed with oligoarthritis and to experience eye inflammation, a condition called uveitis. Oligoarthritis typically develops by age 6. At diagnosis, frequently only one joint is involved and it’s commonly a joint in the leg, such as the knee or the ankle.

If your child also tests positive for a particular antibody in the blood, called the antinuclear antibody (ANA), she faces the greatest risk of developing eye inflammation and will be monitored very closely for eye problems. Compared with other types of JIA, children with oligoarthritis are less vulnerable to severe problems with joint function.

Under the JIA criteria, oligoarthritis is broken into two groups. Children in which the arthritis is confined to four or fewer limbs fall into a category called persistent oligoarthritis. After the six-month window, some children will develop symptoms in additional limbs and will be diagnosed with extended oligoarthritis.

Polyarthritis: This type of JIA – “poly” means “many” – occurs when five or more joints are involved during the first six months. Roughly 25 percent of children with JIA have polyarthritis. Like oligoarthritis, it’s more common in girls. But its onset can occur any time in childhood. Both large and small joints, such as the fingers and toes, may be involved. Your child also may experience arthritis in the neck or the jaw, making chewing and opening her mouth more difficult.

Unlike oligoarthritis, polyarthritis more frequently affects joints on both sides of the body, such as the right and the left knees. Children with polyarthritis might face a lower risk of eye inflammation, but will still need to see an ophthalmologist on a regular basis.

The JIA criteria also sub-divides children with polyarthritis into two categories, those who test positive for rheumatoid factor (RF) – an antibody found in the blood – and those who don’t. The RF-positive form of the disease usually emerges in the elementary school years or later. It’s the type most similar to adult rheumatoid arthritis. Children with RF-positive polyarthritis are typically more vulnerable to severe disease and related joint erosion than those who test negative for rheumatoid factor.

Systemic: Involving about 10 percent of JIA cases, systemic arthritis affects the entire body, beyond just the joints. Both boys and girls are equally vulnerable. Although symptoms can start any time during childhood, they generally emerge by or in elementary school years.

The first sign might be a stubborn fever, sometimes appearing weeks or months before your child complains of any joint discomfort or mobility issues. The fever can be quite high, appearing once or twice daily, before returning to normal. Your child might seem, by all indications, fine in between. Fevers also may be accompanied by a faint rash, one that ebbs and flares over the course of days. Often described as pinkish or salmon-colored, it’s not contagious.

Since this illness can affect the entire body, inflammation may occur elsewhere, enlarging the spleen or irritating the membranes that cover the lungs or heart. In many cases, the fever and other systemic symptoms fade over time. Eye inflammation isn't common with systemic arthritis, but your child’s vision will still need to be checked.

The condition can influence your child’s growth and appetite, making good nutrition a high priority. But the course of the disease, including the number of joints involved, can be highly variable and individual. Only over time will your child’s doctor have a better sense of the challenges she faces.

Enthesitis-related arthritis: This type, which wasn’t included under the JRA criteria, involves inflammation of the entheses, sites where tendons attach to the bone. Boys are more often diagnosed. The arthritis can be mild, involving four or fewer joints in roughly half of cases. In some children, arthritis can move to the spine. Frequently, they test positive for the HLA-B27 gene.

Over time, your child may develop one of the various conditions known as juvenile spondyloarthropathies, which may but do not necessarily affect the spine. Some of those diseases include: juvenile ankylosing spondylitis, arthritis associated with inflammatory bowel disease and reactive arthritis.

Juvenile Psoriatic Arthritis: In this form of arthritis, the skin condition called psoriasis may precede or follow the symptoms of psoriatic arthritis, sometimes by years. The rash may appear as a scaly red rash, emerging behind the ears or on the eye lids, elbows, knees or scalp. Your child may have a family history of psoriasis. Another common sign: a pitting or unusual ridging on the fingernails.

Other: Any arthritis of unknown cause, with symptoms continuing at least six weeks, that doesn’t meet criteria for any one type of JIA or involves symptoms than span two or more types.

Credit: Some of this material may also be available in an Arthritis Foundation brochure. This material was originally prepared for the Arthritis Foundation and is protected by copyright. More information can be found online at