In this issue: New study publishes growth charts custom for individuals with SDS!
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New Study Publishes Custom Growth Charts for Individuals with SDS from Childhood to Adulthood
You've probably seen growth charts at the doctor's office or in a medical record — they track how kids grow over time, comparing their height and weight to others their age. But for some, like those with Shwachman-Diamond Syndrome (SDS), those charts might not tell the whole story.
As we know, SDS is a complex disorder affecting many systems. The majority of individuals with SDS have some degree of exocrine pancreatic insufficiency. This can lead to problems with digesting food and getting the right nutrients, which can cause them not to grow as much as other kids. Other common symptoms of SDS include failure to thrive and skeletal abnormalities, which also impact an individual’s growth and development compared to someone without SDS. So, using regular growth charts can be misleading for someone with SDS because their growth might not match what's expected for their age group.
That's why custom (or disease/population specific) growth charts are so important for people with SDS. These growth charts are made just for them, considering their unique needs and challenges. Unlike regular growth charts, which might suggest they're not growing well, personalized growth charts give a clearer picture of how they're doing. Until recently, custom growth charts were only available to individuals with SDS from 0 to 8 years of age. earlier this month, researchers in Italy published custom growth charts created for individuals with SDS from 0 to 18 years of age! These growth charts (pictured below) for height (a-b), weight (c-d), and BMI (e-f) were created from a large cohort of 121 individuals with SDS and over 700 growth measurements for both males (left panel) and females (right panel).
Growth charts for males (left) and females (right) with SDS for height (a-b), weight (c-d),
and body mass index (BMI; e-f) of patients with SDS from ages 0 to 18 years.
These researchers found that the 50th and 3rd percentiles of weight and height of the pediatric general population corresponds to the 97th and 50th percentiles of patients with SDS aged 0-18 years, respectively. In other words, if a child with SDS weighs in at about the 3rd percentile on the generic growth chart, that would correspond to the 50th percentile on the SDS growth chart. This could then be interpreted as the child doing well, right on target/average in terms of their weight compared to other children who also have SDS. Of course, families are encouraged to discuss such interpretations and all treatments with their health care team. This finding is an example of how using regular growth charts can be misleading for someone with SDS because their growth might not match what's expected for their age group.
Personalized growth charts for SDS not only help you to understand how individuals with SDS are growing, but it can also help doctors track how well treatments are working. For example, if someone with SDS tries a new medicine or therapy, this growth chart for individuals with SDS can show if it's helping them grow stronger and healthier.
These growth charts also help families understand their child's growth better, from 0 to 18 years. Instead of feeling confused by the numbers, you can see how your loved one is doing compared to others with SDS. This can help you feel more confident in managing your loved one’s health and making decisions about their care.
We encourage you to share this publication and these growth charts with your healthcare team to see how they can help you in your journey with SDS!
Pegoraro A, Bezzerri V, Tridello G, Brignole C, Lucca F, Pintani E, Danesino C, Cesaro S, Fioredda F, Cipolli M. Growth Charts for Shwachman-Diamond Syndrome at Ages 0 to 18 Years. Cancers (Basel). 2024 Apr 5;16(7):1420. doi: 10.3390/cancers16071420. PMID: 38611098.
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