If you have a child with cystinosis (or any chronic disease really), you know the challenges of informing and educating the school staff.
As a parent of a child with a chronic disease, YOU are the ultimate caregiver. But, unless you want to keep your kid in a bubble, you’ve got to let them go to school and discover who they are—which means, in order to quiet your separation anxieties, you’ve got to know your child is in good hands at school.
Face-to-face conversations are a great way to inform your child’s school’s staff. Some parents put together packets and notes so that any answers teachers or nurses may need are on hand. Still, it can be hard to organize it all.
That’s why Raptor Pharmaceuticals has developed the Cystinosis Care Instructions.
On 11 printable pages, you’ll have the space to provide:
- Emergency contact information
- Doctor contact information
- Specific needs
- Dietary restrictions
- Emergency room protocol
- Medications and supplements
- Side effects
There’s also a general cystinosis overview and clinical considerations in the packet to which the school staff can refer.
Does informing your child’s school staff about cystinosis GET any easier? Probably, but this is definitely a start for sure.