It’s natural to be frustrated by the need to stick to a schedule, especially if it disrupts your school day or your sleep. Talk to your doctor about your dosing schedule and what changes you might be able to make. Also, know how important it is to stay committed to your medicine routine. Cystinosis does not rest, and you must stay ahead of it to be as healthy as possible.3-7 Instead of thinking of your medicine as a burden, you may find it helpful to think of it as your weapon against cystinosis.
Work with your doctor, dietitian, or nutritionist to make some changes. You may be able to enjoy your favorite foods in moderation.8
Gum or mints can help.
It can be discouraging if something is out of your control—like your size—and limits your fun. Maybe cystinosis keeps you from winning a race, but you can still enjoy running. Are there other sports you like or other ways to enjoy being outdoors? It can help to focus on the things you love to do, like painting, yoga, or hiking. What’s your thing?
If you’re being bullied, you might think there’s nothing you can do about it. But there are many things you can do!
- 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.
- Cystinosis Transitioning Guide, Cystinosis Research Network website. Available at https://cystinosis.org/research/article-library/transition. Accessed August 20, 2015.
- 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.
- Gahl WA, Thoene JG, Schneider JA. Cystinosis. N Engl J Med. 2002;347(2):111-121.
- Gahl WA, Balog JZ, Kleta R. Nephropathic cystinosis in adults: Natural history and effects of oral cysteamine therapy. Ann Intern Med. 2007;147:242-250.
- 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.
- Nesterova G, Gahl WA. Cystinosis: The evolution of a treatable disease. Pediatr Nephrol. 2013;28:51-59.
- Data on file, Horizon Pharma plc 2016.
- Cystinosis Parent Handbook, Cystinosis Research Network website. Available at https://cystinosis.org/images/research/article-library/overview/Cystinosis-Parent-Handbook-Final.pdf. Accessed August 20, 2015.
- National Institutes of Health, MedlinePlus. “Photophobia.” Available at http://www.nlm.nih.gov/medlineplus/ency/article/003041.htm. Accessed July 30, 2015.