Talking About PROS
As a caregiver to a child with PROS, you may be looking for ways to help educate their peers, other parents, or childcare professionals about their PROS condition. The following superhero-themed resources are designed to make it easier for you and your child to talk about PROS with others—whether at school, home, a playdate, or a doctor’s appointment.
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Join “The PROS” as they use their powers to help others with PROS
“The PROS” Comic Book
Follow a team of superheroes-in-training called “The PROS,” who each have a unique PROS condition. Together with their teacher, Professor P, The PROS help other kids living with PROS find support and community. For ages 8 years and up.
Make new connections at school
PROS Pals Workbook
This printable workbook is full of fun and engaging activities, like fill-in-the-blanks, coloring, and connect-the-dots, that are designed for your child to complete with a peer to help them build shared understanding, empathy, and friendship. For ages 5 years and up.
Learn important PROS terms
Glossary of PROS Terms
Does your child have questions about PROS terms or some of the words they hear at doctors' appointments? This glossary includes easy-to-understand definitions of common PROS medical and diagnostic terms. For ages 8 years and up.
Navigate conversations about PROS
The way you and your child discuss PROS with others will vary depending on whom you are speaking with and the goal of the conversation. The following 3 guides will help you effectively communicate at home, school, and the doctor's office.
Talking About PROS
Not sure how to explain PROS? Want to share your experiences or explain why you don't feel like answering questions? This guide includes tips for how to have effective conversations about PROS. For ages 12 years and up.
Talking About PROS at Home
PROS impacts the whole family. Check out these tips for starting a conversation with your children about PROS. For parents/caregivers.
Talking About PROS at School
Classmates and teachers often have questions about PROS. This printable note card includes tips to help children decide what they want to share about PROS. For ages 8 years and up.
Talking About PROS at the Doctor's Office
Make the most of upcoming appointments, and get tips for talking about PROS symptoms. For parents/caregivers and young adults.
To learn about each PROS condition—including the signs, symptoms, and common causes—click here.
KTS (Klippel-Trenaunay Syndrome)
CLOVES syndrome (Congenital Lipomatous Overgrowth, Vascular malformations, Epidermal nevi, Scoliosis/skeletal and spinal)
ILM (Isolated Lymphatic Malformation)
MCAP or M-CM (Megalencephaly-Capillary Malformation)
HME (HemiMegalEncephaly)/DMEG (Dysplastic MEGalencephaly)/Focal cortical dysplasia type II
HHML (HemiHyperplasia-Multiple Lipomatosis)
FIL (Facial Infiltrating Lipomatosis)
FAVA (FibroAdipose Vascular Anomaly)
Macrodactyly
Muscular HH (HemiHyperplasia)
FAO (FibroAdipose hyperplasia or Overgrowth)
CLAPO syndrome (Capillary malformation of the lower lip, Lymphatic malformation of the face and neck, Asymmetry of the face and limbs, and Partial or generalized Overgrowth)
Epidermal nevus, benign lichenoid keratosis, or seborrheic keratosis
Other conditions may be identified and characterized as PROS. Talk to your doctor to find out if your condition is a PROS condition