10 Empowering Tips to Prepare Your Child Living With a Rare Disease for College

I want to talk to you about something close to my heart – preparing your high school child living with a rare disease for college. In the words of Robin Roberts, a myelodysplastic syndrome (MDS) survivor who triumphed over her own rare disease, "Make your mess your message."

As my daughter goes through high school, I want her to learn how to navigate the educational system while managing a chronic condition. I wholeheartedly believe that with the proper knowledge and tools, youth like my daughter, who is living with a rare disease, can thrive in college and beyond.

Preparing my teenager for the next chapter

At times, I find myself pondering the future when my daughter ventures off to college, ready to embrace full independence. The thought of her being away fills me with a sense of longing, yet I treasure each precious moment spent with her in the present.

Here are 10 empowering tips to help prepare teenagers with a chronic condition for this exciting chapter in their lives.

1. Knowledge is key

I'm starting by delving into colleges with robust disability support services. I believe it's imperative to understand what the disability services office offers, such as accommodations and healthcare services that will empower her to make informed decisions.

2. Involve your child

I strongly believe that my child should take an active role in selecting the colleges to apply to. With her firsthand experiences in visiting campuses, interacting with professors, and connecting with students, she can make an informed decision about the college that best fits her academic and personal goals. I want to empower my daughter to own the college selection process and trust her to make the right choice.

3. Financial aid and scholarships

I want to emphasize that even though college costs can be overwhelming, financial aid options and scholarships are available specifically for students with disabilities. Exploring and uncovering these resources is crucial to pave the way for my child's dreams.

I will prioritize researching and applying for financial aid and scholarships that can alleviate the financial burden and make their college aspirations more attainable. Many rare conditions and organizations provide rare disease-related scholarships.

4. Build a support network

It is important for college-bound students to tap into disability services offices, student organizations, and online communities that are specifically designed for students living with rare diseases. By connecting with others who can relate to their journey, they can gain valuable support and insights to help them navigate college life more successfully.

I will encourage my child to reach out and be a part of these communities to foster connections and access the resources they need to thrive in their academic journey.

5. Develop self-advocacy skills

I firmly believe that college is a crucial time for personal growth and independence. I will support and encourage my children to assert their needs, communicate effectively with professors, request necessary accommodations, and navigate college life with confidence.

By empowering them to advocate for themselves and take charge of their educational journey, I know they will develop valuable life skills and thrive in the college environment.

6. Work on time-management skills

Balancing academics and health is essential for success and well-being in college. To support this, I will help them develop effective time management skills while in high school. Together, we will prioritize tasks, set achievable goals, and create a schedule that allows for a healthy work-life balance.

By instilling these habits, I believe my child will be able to maintain their health while achieving academic success during their college years.

7. Educate peers and roommates

I believe it is essential for my child to feel empowered to share their story with their roommates, friends, and classmates. By openly discussing their experience with a rare disease, they can educate others and foster a compassionate and inclusive community on campus.

I will encourage my child to share their journey confidently, advocate for understanding, and promote a culture of empathy and acceptance. This will create a supportive environment for them and raise awareness and empathy towards rare diseases within the college community.

In addition, there may come a time when my child needs peer assistance. Therefore, building a supportive network of peers who understand and are willing to assist can make a significant difference in their college experience.

8. Plan for healthcare needs

I understand the importance of proactively planning for my child's healthcare on campus. Along with coordinating with the health services office, healthcare providers, and insurance companies, it's important to consider the role of a 504 plan.

What is a 504 plan?

A 504 plan is a formal agreement that outlines accommodations and support services for students with disabilities or medical conditions, including rare diseases, in high school. This plan ensures that the student's specific needs are addressed and met, allowing them to fully participate in their education while managing their health.

Before transitioning to college, it's crucial to review and update the 504 plan to reflect any changes in healthcare needs or accommodations required. This can be done through discussions with the school's 504 coordinator, healthcare providers, and your child themselves.

By having a well-established and updated 504 plan, we can communicate effectively with the college and ensure the necessary support is in place from the beginning. This proactive approach will lead to a smoother transition and a better-equipped healthcare plan for my child's well-being on campus.

9. Foster independence

I think it's very important to encourage and empower my child to manage their medications, express their needs confidently, and build resilience. By taking responsibility for their health, they will develop valuable skills that will serve them well throughout their college years and beyond.

I can support my child by discussing the importance of self-care, time management, and cultivating healthy habits. Encouraging them to establish regular medical check-ups, stay on top of medication schedules, and reach out to healthcare professionals when needed will help them prioritize their well-being.

Furthermore, I will remind my child to familiarize themselves with resources available on campus. These resources can provide guidance, support, and additional tools for managing their health effectively.

10. Emphasize emotional well-being

College can be emotionally challenging, especially for students with rare diseases. Encourage your child to prioritize self-care, seek support when needed, and engage with campus resources that promote mental health.

Preparing your high school child with a rare disease for college may feel overwhelming, but remember, you're capable of this challenge! With this guidance and these tips, you can confidently empower your child to pursue their dreams.

Their rare disease is a part of their journey, adding to their strength and unique perspective. So, step forward with assurance, dear friend, and guide your child toward a college experience filled with growth, joy, and endless possibilities. They have the resilience to achieve greatness.

Best wishes for a successful college journey ahead!

Do you have a high schooler living with a rare disease?

How can parents empower their children to take control of their health and confidently manage their needs while thriving independently on campus? Share with us in the comments below!