You turn eighteen. Your disease has not changed overnight, but suddenly you may be expected to schedule appointments, answer medical questions, manage refills, and explain a rare diagnosis to a new doctor. That is a lot to learn on a birthday.
A successful transition starts earlier, with small opportunities to practice. The goal is to help a young person understand their health and participate in decisions, with the support they need. Transferring to a different clinic is only one part of that process.
Start with one skill at a time
At the next visit, try answering the first question before a parent does. Explain the name of your condition, what a usual flare feels like, and which medicines you take. It is fine to use a written list. Knowing where to find accurate information is itself a useful skill.
Over time, practice these tasks with your family or another trusted supporter:
- Describe your usual symptoms and any important complications.
- Name each medicine, why you take it, and how you obtain refills.
- Use the clinic portal or phone system to ask a question.
- Make an appointment and arrange transportation.
- Explain what the care team has told you to do during a fever or other new symptom.
These are learning goals, not a test of maturity. Disability, fatigue, language barriers, and financial pressures can change the support someone needs. An adult approach to care can include ongoing family help and supported decision-making.
Build a medical summary that travels with you
Rare diseases are easier to explain when the essential facts fit on a page. Include your diagnosis or working diagnosis, the actual genetic report if testing was done, current treatments, allergies, prior treatments and why they stopped, major complications, and your clinicians’ contact information. Add the monitoring and emergency plans agreed with your team.
Keep a copy where you can access it when away from home. Before sending records, confirm where the new practice wants them. A referral placed is not the same as an appointment completed.
Plan for the ordinary things that can interrupt care
College, a new job, or moving can affect insurance, pharmacies, infusion locations, and medication storage. Find out who will prescribe between your last pediatric visit and your first adult visit. Ask how much time refills and insurance authorizations usually take. Discuss a backup plan before a supply runs out.
Primary care still matters. Preventive care, mental health, sleep, sexual health, contraception, and pregnancy planning belong in transition conversations alongside inflammation. Young people should have opportunities to speak privately with their clinician, while understanding when information needs to be shared for safety.
Make the handoff a shared responsibility
Parents do not need to disappear from the room or hand over every task at once. A useful question is, “Which task will you take the lead on this month, and where would you like help?” The clinical teams also have responsibilities: identify an appropriate receiving clinician, communicate the plan, and confirm that follow-up has happened.
Got Transition offers structured readiness and planning tools for youth, families, and practices. Their framework treats transition as preparation, transfer, and integration into adult care—not a single appointment.
Try this before your next visit
Choose one skill to practice, bring an updated medication list, and ask: “What still needs to happen before my care moves?” You do not need to master everything at once. The aim is a reliable plan and a team that helps you use it.
Keep reading
Sources and further reading
- Got Transition: Six Core Elements and family tools
- Gabriel et al. Outcome evidence for structured pediatric-to-adult transition interventions (2017)
Adapted from Jonathan S. Hausmann’s presentation, “Improving the transition of children with autoinflammatory diseases to adult care,” with references and terminology updated for this article. Individual patient cases and slide images have not been reproduced.
This article provides general education, not a diagnosis or an individual treatment plan. Discuss personal medical decisions with your care team.