Overview
Adult height in Alström Syndrome tends to be lower than in the general population — about 98% of adults are below the 5th centile for height.¹ The growth pattern in Alström has specific features that lead to this outcome and that occasionally warrant intervention with growth hormone therapy. This article covers what's known about growth in Alström and the considerations for treatment.
The typical growth pattern
Children with Alström typically have:
- Normal birth weight and length in most cases
- Normal early growth velocity — often growing well in the first few years
- Accelerated bone age — bone maturity advances 2–3 years ahead of chronological age in many children²
- Earlier-than-typical pubertal-like growth changes in some
- Premature epiphyseal fusion — growth plates close earlier than in typical children
- Adult height below 25th centile in nearly all — typically below 5th centile
The combination of accelerated bone age and premature growth plate closure means that the growth window is shorter than typical, contributing to short adult stature.
Why this happens
Several factors contribute:
- Reduced growth hormone reserve — about 50% of non-obese children with Alström have functionally inadequate growth hormone secretion³
- Early elevations in IGF-1 that may close growth plates early
- Hormonal disruptions during the typical growth period
- Possibly direct ALMS1 effects on growth-related signaling
The exact mechanism remains an active research area.
Monitoring growth
Growth surveillance is part of pediatric Alström care:
- Height and weight at every visit
- Plotting on growth charts to track velocity and centile position
- Bone age x-ray (left wrist and hand) — typically done if growth pattern raises concerns
- Growth hormone testing if clinically indicated:
- GH stimulation tests (clonidine, glucagon, arginine) - IGF-1 and IGFBP-3 levels - 24-hour GH monitoring in some cases
Pediatric endocrinology guides the assessment.
Growth hormone therapy
In selected children with documented growth hormone deficiency, growth hormone therapy can be considered. Considerations:
Potential benefits
- Increased final adult height (when started early enough and growth plates haven't closed)
- Improved muscle mass and body composition
- Better bone density
Considerations
- Growth hormone therapy interacts with insulin sensitivity — can worsen insulin resistance and diabetes risk
- Cardiac considerations — growth hormone may affect heart muscle in some cases
- Monitoring required during treatment
- Not all children with Alström are candidates⁴
Alternative approaches
For some patients, growth hormone may not be appropriate. Focus shifts to:
- Optimizing nutrition
- Managing thyroid and other hormonal contributors
- Supporting overall metabolic health
- Skeletal health monitoring
Skeletal considerations
Beyond height, Alström-related skeletal features include:
- Brachydactyly — short fingers and toes
- Wide, thick, flat feet
- Short hands
- Scoliosis or kyphosis in some patients
- Premature osteoarthritis in some adults
These don't typically affect daily function dramatically but warrant orthopedic awareness.
Adult height and identity
Most adults with Alström adjust to their adult stature without significant difficulty. Some specific considerations:
- Custom-fitted clothing may be needed
- Some accommodations in workplaces and homes (counter heights, vehicle seating)
- The combined experience of short stature plus other Alström features can affect self-image; mental health support helps when needed
Common questions
Frequently asked questions
Short answers grounded in the article and the underlying references, so families can quickly understand the main point without losing the medical meaning.
Question
Will my child be unusually short?
Answer
Most likely shorter than family expectations would predict, with adult height typically below the 25th centile and often below the 5th centile. Individual variation is meaningful.
Question
Should we ask about growth hormone?
Answer
Reasonable to discuss with your pediatric endocrinologist, particularly if your child's growth velocity is slowing more than expected or if formal testing suggests deficient growth hormone reserve. The decision involves weighing potential benefit against the metabolic considerations of Alström.
Question
Will short stature affect my child's health?
Answer
Short stature itself isn't a health problem. The underlying hormonal disruptions that contribute can have effects (bone density, body composition) that warrant monitoring.
Question
Can adults with Alström get taller?
Answer
After growth plates close (usually by mid-adolescence), additional height isn't possible. Growth hormone after growth plates close has different goals (body composition, bone density).