What Is Achondroplasia? Resources + Tools
What Is Achondroplasia? Resources + Tools

Health and Wellness in
Middle Childhood

6 TO 12 YEARS

Health and Wellness in
Middle Childhood

6 TO 12 YEARS

Middle childhood is a time full of discovery, growth, new challenges, and opportunities. With the right support, children with achondroplasia can thrive during these important school-age years

Potential medical complications in children with achondroplasia

Achondroplasia may be associated with specific medical complications, though most children will not experience everything listed here. Proactive care and support can make a meaningful difference. Learn more below about how to help support your child’s health.

Tracking growth and development in achondroplasia

Every child with achondroplasia grows and develops at their own pace. Using growth charts made specifically for children with achondroplasia helps your child’s doctor track their height, weight, and head size more accurately. As your child grows, you may notice visible differences in body proportions, like shorter arms and legs compared with the torso.

It’s important to know that standard weight and body mass index (BMI) charts aren’t accurate for children with achondroplasia. Relying on charts for children of typical stature can lead to an overestimation of how much extra weight a child is carrying. That’s why it’s recommended to use growth charts developed specifically for children with achondroplasia, which allow for more accurate tracking over time.

Growth Monitoring Charts Visit resource

Puberty in children with achondroplasia

During puberty, some physical changes may look different in children with achondroplasia compared with their average-height peers.

  • Children with achondroplasia don’t experience a typical growth spurt during puberty, so they gain less height overall compared with their peers. As average-height children grow rapidly during this time, the height difference between your child and their peers may become more noticeable
  • Most growth occurs in the torso, increasing sitting height more than standing height
  • Body proportions may change, making the difference in limb and torso length more noticeable

Every child experiences puberty in their own way. Open conversations about these changes and reassurance that they are normal for their body can be helpful. Health care providers can offer additional guidance and support if questions arise.

Some children with achondroplasia may also experience body image concerns during this stage of life. Encouraging open, supportive conversations and creating a positive environment can help them navigate these feelings (see Building a positive environment for your child with achondroplasia).

Healthy weight management for children with achondroplasia

Children with achondroplasia may be more likely than their average-height peers to gain extra weight starting at a young age. This can happen for several reasons, including differences in the way their body uses energy, lower activity levels, and social or emotional stress.

Maintaining a healthy weight can support overall well-being and help reduce the risk of sleep apnea, joint and back pain, and heart problems later in life. Building healthy habits like encouraging active play, offering balanced meals, and creating a positive, supportive environment can help children feel their best. Weight can be a sensitive topic, especially for children who may already feel different or face challenges related to body image. It’s important to approach any conversations on this topic with care, focusing on health rather than appearance.

Standard weight and BMI charts are not accurate for children with achondroplasia and often overestimate excess weight. That’s why it’s recommended to use achondroplasia-specific growth charts for more reliable tracking over time.

In addition to the above, experts recommend:

  • Scheduling yearly check-ups with a pediatrician
  • Building a balanced diet using foods from all 5 food groups
    • Make half the plate vegetables or whole fruits
    • Choose mostly whole grains
    • Include a variety of lean proteins
    • Incorporate low-fat dairy products
    • Limit foods and drinks high in added sugar and saturated fat
  • Encouraging daily physical activity that your child enjoys
  • Offering emotional support and reassurance as needed

If you are concerned about your child’s weight, speak with a registered dietitian, ideally someone with experience in achondroplasia. Every child is different, and their care team can help you find what works best for your child’s health and confidence.

Anesthesia safety for children with achondroplasia

Some children with achondroplasia will need anesthesia for certain tests or surgeries that require them to remain still, like certain scans or an ear tube insertion procedure. Many children with achondroplasia undergo surgery without any problems, but they may face certain risks with anesthesia, such as:

  • Uncontrolled neck movement leading to squeezing of the spinal cord and breathing problems
  • Receiving the wrong medication dosage
  • Difficulties with inserting an intravenous line due to limited elbow extension
  • Difficulties with placing a breathing tube if it’s needed

It’s important that your child receives care from an anesthesiologist experienced in treating patients with achondroplasia.

For certain surgeries, especially those involving the spine, doctors may also recommend neuromonitoring. This is a technique that helps track the health of the nerves in real time, adding an extra layer of safety.

If your child has obstructive sleep apnea (OSA), they may need additional monitoring or other special precautions before, during, and after anesthesia. OSA can cause pauses in breathing during sleep, and anesthesia can make this more likely by relaxing the muscles that keep the airway open. For this reason, medical guidelines recommend that anesthesia be provided by an anesthesiologist with experience caring for individuals with OSA.

You can also talk to your child’s care team about the Skeletal Dysplasia Management Consortium’s Guidelines, which outline best practices to support safe anesthesia care.

Dental and Orthodontic Considerations for children with achondroplasia

Children with achondroplasia may have differences in how their teeth are spaced and how their upper and lower jaws line up. Although these differences can occur in all children, they are particularly common in children with achondroplasia and can sometimes impact speech. Like other children this age, management may include braces to guide tooth alignment or palate expansion to widen the jaw and make more room for teeth.

Some children with achondroplasia may also need extra care during dental visits. Not every dental or orthodontic procedure requires anesthesia, but some do. Because children with achondroplasia have unique safety considerations, it is important to review these with the care team.

Learn more about anesthesia and achondroplasia

Whenever possible, it is recommended to seek dental care from a
clinic with experience treating patients with achondroplasia.

Optional Procedures, Treatments, and Research Studies for Children With Achondroplasia

Some families may consider a treatment or procedure at different points in their child’s journey. Choosing whether to start or continue an optional treatment is a personal decision.* It may help to talk with achondroplasia experts, involve your child when appropriate, connect with other families, and explore resources like advocacy group websites.

For information about approved medications for achondroplasia or procedures like limb-lengthening surgery, talk to your child’s healthcare provider.

For information about clinical trials studying potential medications for achondroplasia, visit ClinicalTrials.gov.

*BridgeBio does not recommend or endorse any specific treatments, procedures, or external organizations mentioned here. All medical decisions should be made in consultation with your child’s health care provider, taking into account their individual needs and medical history.

Next section: Social, emotional, and mental health

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HEAR FROM THE COMMUNITY

“Having achondroplasia, you are going to come across challenges consistently. The way you are going to deal with them is really going to impact your life. Yes, I have challenges; obstacles get thrown at me all the time, but it’s the way of going about it and realizing there is so much more to life than having achondroplasia.”

- Young adult living with achondroplasia

“I see in my future pretty much what anyone else would: graduating school, graduating college, going on to a job I like, starting a family.”

- Teenager living with achondroplasia

“My joy is seeing my child’s daily progress. There were many things she couldn’t do like other children. She is gradually becoming capable of those things, little by little. I realized that it’s okay to grow slowly.”

- Mother of a child living with achondroplasia

“I would tell myself back then [at time of diagnosis], just take a deep breath and let go of the fear a little bit. Fear is normal. Once you are over that fear, you kind of just dive in. You dive into the information, and you educate yourself and learn everything you can learn about achondroplasia and really try to be your kid’s biggest advocate.”

- Mother of a teenager living with achondroplasia

“We were always outside, we always were being competitive, playing sports, just being kids.”

- Young adult living with achondroplasia

“Our daughter is a person. She has feelings. Yes, she may be physically different than other children or other people, but I think that it is important to be aware of those differences without necessarily calling attention to them.”

- Father of a teenager living with achondroplasia

“My friends would describe me as someone with a big personality, very outgoing, and someone that always is smiling. I’m a people person, and I love making people happy.”

- Young adult living with achondroplasia

“What I want to convey to society is that rare conditions exist, and there are many people in the world who need help. I genuinely wish that the world would be kinder. I hope people have a level of knowledge that allows them to understand the condition when they see a child that is smaller or looks different.”

- Mother of a child living with achondroplasia

“The greatest joy as a parent is seeing my son be energetic and cheerful. I hope that my son will continue to look forward proudly, hold his head high, and live confidently and cheerfully.”

- Mother of a child living with achondroplasia

“Typically, with achondroplasia, people focus on height, but there are other important aspects of the condition that impact quality of life.”

- Father of a teenager living with achondroplasia

“What we have seen is that she has done a great job of adapting herself, getting creative, doing things a little bit differently, but she always finds a way to be successful.”

- Father of a teenager living with achondroplasia

“Really, we are just like everyone else. We may look different, but we like being treated like everyone else.”

- Teenager living with achondroplasia

“We have relied heavily on the community. We are quite appreciative of the community and the resources that are available to help parents, siblings and individuals with achondroplasia. The diversity within this community has been quite enriching on many levels.”

- Father of a teenager living with achondroplasia

“I was four years old when my younger brother was born. I was young and didn’t understand what achondroplasia was. I don’t care if my brother is tall or short. I was simply happy to have a younger brother.”

- Sibling of a person living with achondroplasia