School and College

If you have cystinosis, your school experience will be different than that of your classmates. You’ll have to do some things differently—for example, take medications at precise times each and every day.1,2 Because cystinosis causes dehydration, you will have to drink more water and take more frequent bathroom breaks.3 You may need to wear sunglasses, even indoors, because of increased sensitivity to light.4-6 Depending on your medication regimen, you may often feel tired or nauseated, which may interfere with your ability to complete homework assignments on time or to take tests on the same schedule as other students.7 Furthermore, potentially serious complications related to cystinosis—such as unexpected doctor visits, hospitalizations, or dialysis—may lead to unavoidable absences.3

But it’s important to remember that with the right support, you should be able to enjoy your time at school—and to excel there, too!

Arranging support at school

Cystinosis doesn’t define you, and it doesn’t define your potential at school. Students with cystinosis typically display normal intelligence and school performance. In some cases cystinosis may create problems related to visual processing, math, spelling, attention, and social interaction.6,8 There are a number of things that you, your parents, and the faculty at your school can do to make life easier and more successful.

Official policies such as individualized education programs (IEPs) and 504 plans can help you receive additional support and accommodations at school. Technology and digital resources in the classroom can be used to help you keep up academically during necessary absences. Other methods, such as teacher notes, may help you complete homework assignments and avoid falling behind. Communication and teamwork are key!3

5 easy accommodations for a student with cystinosis

1. Access to snacks and water during class 3,8,9

2. Permission to use the bathroom as needed3

3. Permission to chew gum or eat breath mints in class (to offset side effects of cysteamine)

4. Additional time to complete homework assignments and tests3

5. Flexibility for disease-related absences3

Student advocate

As a student with cystinosis, an advocate at the school can be a big help. A guidance counselor, nurse, or teacher are all good options for this role. Identify this person at the start of the school year. Your advocate should be someone physically present at school who can answer questions, handle problems, and offer you guidance.3

To make the most of your relationship with a student advocate, it helps to:

  • Create a schedule that allows you and your advocate to meet as often as you need, maybe even once a week.
  • Write down any concerns or issues ahead of your meeting so you know what you want to talk about. These topics might be academic, social, or medical.
  • Educate your student advocate about cystinosis during your first meeting, and offer regular updates on your health, but discuss only the details you’re comfortable sharing.

Individualized Education Programs and 504 plans

An individualized education program (or IEP) is a written document that guides the education of a student with a disability. Because each IEP is designed for a single student, it is truly an individualized plan.10 504 plan refers to section 504 of the Rehabilitation Act. It is a civil rights law that ensures that a child with a disability has equal access to education.11

It is not uncommon for a student with cystinosis to have both an IEP and a 504 plan in place. It can be confusing to have separate plans for one student, and it’s not necessary. The IEP can be more comprehensive, more detailed, and more prescriptive.12 Whether you have an IEP, a 504 plan, or both, these plans should be simple and easy to follow. They must include the important information that will enable school staff to implement the necessary accommodations to meet your individual needs. Some modifications and accommodations that could be appropriate for you include:3

  • An emergency medical plan involving the family, school, and doctors
  • Modified physical education requirements
  • Extra time for homework, tests, and other assignments
  • Being allowed to demonstrate mastery of a subject in different ways besides completing all assignments
  • A quiet place to rest during the day
  • An extra set of clothes to be left with the school nurse

The U.S. Department of Education provides a guide to the Individualized Education Program, including what to include in an IEP.

Many IEP templates are available online. The above link to the U.S. Department of Education gives a comprehensive list of what should be included. Before getting started yourself, it’s a good idea to speak with an administrator at your school who may have a template he or she likes to use.

Going to college

Going to college represents an important time in the lives of many young adults. The process begins with choosing the right school. There are many factors to consider when making this decision, but if you’re living with cystinosis, you’ll need to do some extra research to make sure an institution can provide the tools and resources to help you succeed.

When researching or visiting colleges and universities, it may help to learn about the following topics:

  • Medical institutions: Consider your individual medical needs. Make sure the school can either meet them or is close to a medical institution that has professionals familiar with cystinosis.
  • Nutrition: It’s important to maintain a healthy diet during your time at college. Meet with the institution’s dietitian and chef to communicate your dietary restrictions.
  • Student wellness: Meet with the school’s “Health and Wellness” office to introduce yourself and to make staff members aware of your needs. You will want to share details of your healthcare requirements and educate the staff about cystinosis in case of an emergency.
  • Office for Students with Disabilities: Colleges and universities must have an Office for Students with Disabilities. You have the option to document your health condition with your school. This is important if you think you may need any accommodations to complete your studies, such as extended timelines or absences from class.

The Rehabilitation Act can help you receive the accommodations you need to attend college. It also protects you from discrimination in the workplace when the time comes to find a job.

References

  1. Brodin-Sartorius A, Tète M-J, Niaudet P, et al. Cysteamine therapy delays the progression of nephropathic cystinosis in late adolescents and adults. Kidney Int. 2012;81:179-189.
  2. Levtchenko EN, van Dael CM, de Graaf-Hess AC, et al. Strict cysteamine dose regimen is required to prevent nocturnal cystine accumulation in cystinosis. Pediatr Nephrol. 2006;21:110-113.
  3. Cystinosis Transitioning Guide, Cystinosis Research Network website. Available at https://cystinosis.org/research/article-library/transition. Accessed August 20, 2015.
  4. Goodyer, Paul. The history of cystinosis: Lessons for clinical management. Int J Nephrol. 2011:1-7. Available at http://www.hindawi.com/journals/ijn/2011/929456/. Accessed August 20, 2015.
  5. National Institutes of Health, MedlinePlus. “Photophobia.” Available at http://www.nlm.nih.gov/medlineplus/ency/article/003041.htm. Accessed July 30, 2015.
  6. Nesterova G, Gahl WA. Cystinosis: The evolution of a treatable disease. Pediatr Nephrol. 2013;28:51-59.
  7. Langman CB, Greenbaum LA, Sarwal M, et al. A randomized controlled crossover trial with delayed-release cysteamine bitartrate in nephropathic cystinosis: Effectiveness on white blood cell cystine 1120. Clin J Am Soc Nephrol. 2012;7(7):1112-1120.
  8. Gahl WA, Thoene JG, Schneider JA. Cystinosis. N Engl J Med. 2002;347(2):111-121.
  9. Cystinosis Parent Handbook, Cystinosis Research Network website. Available at https://cystinosis.org/images/research/article-library/overview/CRN_Parent.pdf. Accessed August 20, 2015.
  10. US Department of Education. A guide to the individualized education program. Available at http://www2.ed.gov/parents/needs/speced/iepguide/index.html. Accessed August 21, 2015.
  11. Wrightslaw. Discrimination: Section 504 and ADA. Available at http://www.wrightslaw.com/info/sec504.index.htm. Accessed August 21, 2015.
  12. Wrightslaw. Does a child need an IEP and a 504 plan? Available at http://www.wrightslaw.com/blog/?p=122. Accessed August 21, 2015.