Cystinosis Parent Handbook Final - Cystinosis Research Network

FINDING SUPPORTBuild a Support NetworkYou and your family are not alone. Family support andcommunity building is essential to individual and familylong-term health and success. Contact CRN to connectwith families who have walked in your shoes. Plan to attendregional family gatherings and family conferences.CRN hosts family/physician conferences every two years tofacilitate opportunities for parents, as well as children, teens,and adults with cystinosis to communicate and bond withone another.Conferences and support groups provide opportunitiesfor community, education, advocacy, and empowerment.Extended families members are always welcome.Eventually, you will know families from around the countryand the world who are also living with cystinosis.There are places online to discuss the various aspects ofcystinosis and how it affects our lives, share tips about howwe cope with it, vent our frustrations, and share our fears,our hopes, and our dreams.Examples of support groups for parents, affected adults,caregivers, family, and friends:Cystinosis Support Grouphttp://www.cystinosis.org/support-groupsCRN Facebook Grouphttp://www.facebook.com/groups/6382741905/Researchers and medical professionals are very activeparticipants in CRN, so you can reach out to experts andalso encourage new healthcare providers to reach out forinformation.How Do I Talk to Othersabout Cystinosis?Explaining cystinosis or medical procedures to a childcan be hard for a parent who may still be coping with themagnitude of the diagnosis itself and dealing with their ownfeelings and fears.Parents need to educate themselves about this disease sothey can better manage symptoms, follow the care regimen,make informed choices about medical care, and answertheir child’s questions about it. In general, simplicity andhonesty are the best policies. As your child gets older, andas they show you they are ready by the questions they ask,you can provide more complex answers.Your healthcare team can help both you and your childunderstand cystinosis in a variety of ways. Pediatriciansor specialist physicians, nurses, social workers, andpsychologists will all have their own way of talking with yourchild. Child life specialists, who work in most children’shospitals and many specialty practices, are specially trainedin medical and therapeutic play and other interventions toprepare children for medical procedures and help themunderstand how their bodies work, what to expect aboutmedical procedures, and what the nurses and doctorsare doing.An excellent resource for kids 6-12 years old is the bookentitled Nephropathic Cystinosis Explained to Children,produced by Orphan Europe and the Cystinosis Foundation.In a very simple way, it describes the complexities ofthis disease. To learn how to obtain a copy of this book,visit http://cystinosisfoundation.org.Throughout this guide, we will provide examples, by age,of how families have explained cystinosis to their child.Below, families volunteered their stories of how theyexplained and involved their support network in their child’snew diagnosisExplaining Cystinosis: SarahSarah was only 15 months old at diagnosis and she reallydid not understand much, so I guess that part of having totell her was not a problem. She has grown with the knowledgeand it is just her “normal.” As for the other kids andour extended family, we just came right out with it. At thetime of diagnosis Sarah was very sick. We were devastatedat the diagnosis but also so relieved that we could tell ourfamily that we have a battle plan. I gave my relatives a cardwith CYSTINOSIS written on it because nobody had everheard of it and told them all to Google it! We have had avery open approach to discussions ever since. Our familypolicy is to hide nothing from Sarah or the other kids. Wehave found that knowledge is empowering for all of us. Wefeel a bit more in control of an uncontrollable situation.4Cystinosis Parent Handbook