Young Adults With PI
As children grow into young adults, they gain more independence to prepare for adulthood. This happens in many parts of a young adult's life, and caring for primary immunodeficiency (PI) is no exception.
You can't let it get in the way of things you want to do in your life.
Transitioning to Adulthood
Preparing for independence and adulthood when you have PI involves some extra care and considerations. It is important that young adults learn to take responsibility in managing their own health. This transition should be a process, rather than happening all at once when a young adult turns 18.
There is no standard transition plan that exists, and each plan should be individualized for the patient. Dr. Parag Shah, who leads the Chronic Illness Transition Team at the Ann & Robert H. Lurie Children's Hospital of Chicago, suggests that the transition to adulthood and independence for healthcare management should begin as early as age 14 years.1 To find out if there are similar transition programs in your area, talk to your healthcare team.
Getting involved with healthcare management could take a variety of forms, ranging from scheduling appointments, to asking your doctor questions directly, to preparing and administering your own subcutaneous (SubQ) treatment.
Keep reading for some specific checklists that you can use to ensure you are learning all the skills you'll need to transition to independence and adulthood.
IDF's Adolescents Living with Primary Immunodeficiency Diseases and Transition Skills Checklist: This comprehensive guide for parents addresses the challenges of adolescents with PI, including the special emotional and social needs that come with chronic health issues. It also includes a thorough checklist of skills to help transition adolescents to adulthood.
Be Prepared Checklist
Be Prepared Checklist: Covering everything from information about your healthcare team and medications to being comfortable making your own health choices, our checklist can help you feel prepared for independence.Knowing What to Know
- Do you know the name of all of your conditions?
- Do you know the names and jobs of everyone on your healthcare team?
- Do you know the name and purpose of all of your medications?
- Do you know who to contact for nonemergency questions?
- Can you fill a prescription independently?
- Can you make your own doctor appointment or infusion appointment?
- Do you know where to go for emergency medical care?
- If you do home care, have you ordered supplies from your supplier independently?
- Are you comfortable talking to your doctors and your healthcare team yourself?
- Do you know when to take medications and administer infusions?
- If you do Ig SubQ, do you know how to set up and do your own infusions?
- Are you currently compliant with your medical treatment?
- Have you planned out your transition to an adult primary care doctor?
- Do you have a plan for adult insurance, if yours will change?
- Do you know if you qualify for any government benefits?
- Are you keeping your own medical records or a medical summary?
- Do you know your patient rights, including consent and confidentiality?
Tips for College
In addition to normal adolescent transitions, there are some specific things to take into consideration before beginning college.
Before CollegeChoosing Schools
Where you choose to attend college depends on a variety of factors, but it is worth considering your proximity to home and your home healthcare team.2 If you choose to attend a school that is farther away, keep in mind that it may also include finding new hospitals, healthcare teams and pharmacies.Applications
The same federal laws that protect you from discrimination by your employer also protect you from discrimination by schools. You are not required to disclose your chronic illness or any other disability on an application.2 However, there may be times, such as in your application essay, where telling your story about your experience with PI can help explain who you are, how you can overcome challenges, and explain possible absences in your school records.
After Being AcceptedStudent Health Center
Talk to the staff at your school's student health center to create your new healthcare plan. Consider asking whether anyone is familiar with your condition, what to do if you need assistance after hours, and whether you can meet with the same team on staff so that they can become familiar with your medical history and needs.2Student Disability Center
Every college is required to have a student disability center or office of disability services. This office or center can help you with accommodations or modifications that you may need, including adjustments to housing, meals, transportation, and coursework.2
College Prep Series
This essential guide can help ease the transition from high school to college, or from one college year to the next. You'll find information and tips to help you manage everything from the application process to housing to campus life. Plus, you'll learn about your educational rights as someone going to college with PI.
Call 1-855-250-5111 for your free copy of the College Prep Series.
References: 1. Chronic illness best practices. Ann and Robert H. Lurie Children's Hospital of Chicago website. https://www.luriechildrens.org/en-us/care-services/specialties-services/transitioning-to-adult-care/education_training/Pages/best-practices.aspx. Accessed May 1, 2017. 2. Immune Deficiency Foundation. School Guide for Students with Primary Immunodeficiency Diseases. 3rd ed. Towson, MD: Immune Deficiency Foundation; 2014.
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