The more you learn about achondroplasia, the more overwhelming it might feel. While you can learn a lot on your own, you can also ask a specialist who has expertise in achondroplasia. Working closely with your care team can help ensure you’re getting the right care at the right time.
You can also find a skeletal dysplasia expert—someone with expertise in achondroplasia and other forms of dwarfism or growth disorders. If you don’t have access to a skeletal dysplasia clinic, here are a few questions to ask healthcare providers to help you decide if they have the expertise you are looking for:
How many children with achondroplasia or other skeletal dysplasias have you treated?
Have you been involved in any research on achondroplasia?
What other types of doctors should my child be seeing?
How will you coordinate care with the rest of my child’s healthcare team?
Other Health Professionals
- Occupational therapist helps to improve physical strength and function for activities of daily living
- Physical therapist helps increase mobility, align bones and joints, or lessen pain
- Nutritionist or dietitian helps manage weight and avoid obesity through nutritional planning
Special Considerations When Having Surgery
It is important to work with a surgeon and anaesthesiologist who have experience treating people with achondroplasia. This is because of the special considerations needed to reduce the risks of complications associated with airway management and other anatomical differences.
Consider Needs Other Than Medical Care
Special Needs of Infants
- Be sure to always support your baby’s head, neck and full spine.
- Give your baby lots of supervised tummy time.
- When shopping for a pram, choose one with a solid back.
- Keep your child in a rear-facing car seat as long as possible.
- Don’t let your baby sit unsupported until they can do so on their own. That independence will come in time.
- Be careful about the type of automatic swing you choose. Select one with a hard surface and keep it inclined at a 45-degree angle.
A hallmark of growing up is independence. As children get older, they want to do more on their own – at home, in school, and out in the world. Some simple adaptations to your child’s environment can help them achieve independence and do things for themselves. It’s important to be proactive and reach out to your child’s school about basic adaptations that can help.
- Step stools, lower door levels and light switches, and lower appropriate kitchen appliances are just a few examples of everyday basic accommodations that can make life easier for children and adults with achondroplasia.
- Personal hygiene is just that – personal. But your child may need help with hygiene, either from another person or by using adaptive tools, such as a toilet wand, which can be introduced when potty training.
- In school, adaptations like weighted pens and wrist braces can help your child keep up with note-taking and written assignments. Lower hooks and lockers can also help your child be independent.
- Modified chairs provide better back support, and foot stools keep your child’s feet from dangling for more comfort in school and at home.
- When your teenager starts to drive, pedal extenders can help them reach the pedals so they can drive safely, and seat boosters can help them see above the dashboard.