What do you need to know about your child’s Zellweger spectrum disorder (ZSD)?

Defining ZSDs

It is 1 disease, but it has a spectrum of severity

Until recently, ZSDs were viewed as 3 separate diseases, but we now know they are a set of disorders that form a spectrum, or continuum, of 1 disease. This spectrum can range from mild (infantile Refsum disease, or IRD), to moderate (neonatal adrenoleukodystrophy, or NALD), to severe (Zellweger syndrome, or ZS).

Image of a human silhouette standing in front of a thick bar that ranges in shades of the color orange to represent the spectrum of disease by the 3 subgroups: IRD, NALD, ZS

ZSDs are also known as peroxisome biogenesis disorders (PBDs). These disorders are caused by a loss of function in important parts of your cells called “peroxisomes,” which can affect many parts of the body--from the eyes to the liver. Learn more about how it works here.

As a spectrum, ZSDs will affect each patient differently. How the disorders affect patients depends on their age when ZSD symptoms first start to appear.

No matter where someone is on the Zellweger spectrum, the impact is serious and lifelong, and it needs to be monitored consistently.

You are your child’s Champion—know how their ZSD is affecting them

What to watch out for when your child has a ZSD

How and when ZSDs affect different parts of the body can vary widely

ZSDs affect each person differently. Monitor your child for any changes to his/her symptoms, so you and your child’s healthcare team can provide timely care.

Not all changes to your child’s health can be easily noticed, so going to routine checkups with different specialists is very important

Find your team

How do ZSDs affect different body systems and functions?

Uncover the underlying cause of ZSDs

ZSDs can be confusing and overwhelming, but having all the facts can empower you to best support your child or loved one.

Click through the slideshow below to learn how ZSDs develop, and what you can expect when caring for a child with this disease.

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