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 consider asking healthcare providers to help you decide if they have the expertise you are looking for:

one

How many children with achondroplasia or other skeletal dysplasias have you treated?

two

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 anaesthetist 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.

img

Consider Needs Other Than Medical Care

Expert medical care is just one part of caring for a child with achondroplasia. There are also practical considerations, from keeping your infant safe to accommodating the physical needs of your school-age child. Taking proactive steps and turning to others for support can help. You can share this information with your child’s pediatrician, who may be less familiar with achondroplasia than the specialists your child sees.



Special Needs of Infants

The early months of your baby’s life require extra attention. This is because of potentially serious complications that can happen in that first year.You can help protect your infant by following your doctor’s advice and some basic guidelines. Many of these are common-sense tips for the safety of all babies:
  • 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 stroller, choose one with a solid back.
  • Keep your child in a rear-facing car seat as long as possible.
  1. Don’t let your baby sit unsupported until they can do so on their own. That independence will come in time.
  2. 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.

Ask your skeletal dysplasia specialist for recommendations for the best types of swings, car seats, and other supportive devices for infants with achondroplasia. Be sure to talk to your doctor for medical advice on how to best protect your infant.



Adaptations

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, or 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.


Psychological & Social Support

The adolescent years are tough. From peer pressure to insecurities, teenagers go through a lot. These years can create unique challenges for a teenager with achondroplasia, who may feel different, left out, or bullied. Sadly, social challenges cause some teens with achondroplasia to experience depression or anxiety.

These challenges can carry into adulthood. It’s important to connect with resources that can offer psychological and social support, such as mental health professionals, school counselors, and advocacy groups.

Local chapters of advocacy groups also offer support groups so families can connect with one another.



Community

Helpful information and resources for living with achondroplasia can be found through these associations:

International Coalition of Organizations

Supporting Endocrine Patients (ICOSEP) builds a global voice to share information and resources pertaining to medical conditions affecting children’s growth.

Icosep.org