Patient Stories

Laura, mom to two children with Wilson’s disease, United States. Wilson’s disease is all-encompassing, but it can also be invisible.  With young children with Wilson’s disease, each day presents the challenge of finding the time between school and our busy lives to take multiple doses of medication appropriately (on an empty stomach) and to carefully monitor all foods that are eaten.  Staying healthy with Wilson’s disease requires both a daily and lifelong conscious effort to follow treatment guidelines that are difficult to incorporate into a growing child’s ever-changing life.

After searching for information and support after my two children were diagnosed with Wilson’s disease, I quickly discovered I would need to be the subject matter expert on this rare and complex disease in order to effectively advocate for my children. With a lack of specialized multidisciplinary healthcare teams, parents like me must educate ourselves on all aspects of this systemic disease. We must work together to increase awareness of Wilson’s disease so that we can attain the best outcomes for our children.

As a parent of two young children with Wilson’s disease, life can be challenging. As with all rare diseases, many people can’t possibly understand the particular struggles each patient and family face on a daily basis.  Due to the nature of Wilson’s disease, there is not an abundance of research, support, and treatment options for the youngest patients. As healthcare professionals become more aware of Wilson’s disease, we will have more children diagnosed younger than ever before. I am using my voice to let other caregivers, families, and patients know they are not alone. There are people out there who understand and who will help you on this journey.