What to know about Friedreich’s ataxia and scoliosis
Last updated Sep. 16, 2025, by Susie Strachan
Fact-checked by Inês Martins, PhD
Scoliosis, or sideways curvature of the spine, is common in children and teens living with Friedreich’s ataxia (FA).
It can begin at different stages, sometimes before walking becomes difficult and sometimes after. The curve may become more noticeable or affect comfort as your child grows.
Scoliosis is different for every child, but with early support and a care team that understands FA, there are ways to help manage it and protect your child’s mobility and well-being.
How FA contributes to spinal curvature
FA affects the nerves that help control muscle tone and coordination. As those nerves become damaged, the muscles that support the spine can weaken.
When muscles lose strength or work unevenly, the spine may gradually shift out of alignment. This is especially likely to occur during growth spurts.
Over time, the spine may start to curve, even in children who can still walk. The risk is highest between the ages of 10 and 16, or during the growth spurt associated with puberty, but scoliosis can continue to progress into early adulthood.
For some, the curve stays mild and manageable. For others, it may become more noticeable, cause discomfort, make it harder to sit upright, or affect breathing.
Being alert to early symptoms and having regular check-ins with your child’s care team can make a difference.
Signs to watch for
Scoliosis can start with subtle changes that may go unnoticed initially, such as when your child is growing quickly.
If you’re a teen, you might notice these symptoms yourself before anyone else does.
Physical signs
Physical signs of scoliosis may include:
- uneven shoulders or shoulder blades, with one side sticking out or sitting higher
- a visible curve in the spine, especially when wearing tighter clothing or swimwear
- one hip higher than the other, or the pelvis looking tilted or rotated
- the head not being centered over the body
- a rib hump or bump, most noticeable when bending forward
- clothes hanging unevenly or twisting, such as a shirt pulling to one side
Postural or functional changes
In addition to physical signs, some postural or functional changes may occur with scoliosis, including:
- leaning to one side when sitting or walking
- worsening balance or instability
- increased fatigue when sitting upright
- pain or discomfort in the back or shoulders, though many with FA-related scoliosis don’t feel pain at first
If you spot any of these changes, it’s worth bringing them up with your child’s doctor or FA care team. Early detection can help guide treatment and prevent more serious problems later.
Diagnosis and screening methods
As a parent or caregiver of a child with FA, it’s helpful to know when scoliosis is most likely to appear so you can monitor your child’s spine closely and catch any changes early.
For instance, scoliosis can appear or worsen during growth spurts, so it’s a good idea to check your child’s posture and spine regularly as they grow.
Additionally, if walking becomes more difficult or your child starts using a wheelchair, it’s important to watch for new signs of spinal curvature.
Your child’s FA care team can help you decide how often to screen for scoliosis and tell you what to watch for as your child grows.
Screening methods
Healthcare providers often start with a physical exam and spinal X-rays to check for scoliosis. These images can be taken from the front and side while standing. If your child can’t stand, the X-rays may be done while lying down.
The most common way to measure a spinal curve is by using the Cobb angle, which helps determine how much the spine is curving. In some cases, more advanced imaging tools, such as a special rotating booth, may be used to get more consistent measurements.
Your child’s care team may also check for pelvic tilt by looking at the angle between the top of the hips and the bones in the lower spine. This helps assess how scoliosis may be affecting their sitting balance and comfort.
Treatment options and management
Treatment for scoliosis in FA depends on the degree of spinal curve and your child’s age, mobility, and overall health.
The goal is to slow curve progression, support posture, and protect comfort and function.
Non-surgical approaches
If the spinal curve reaches 40 degrees or more, your child’s care team might suggest a back brace, especially if they’re still growing. Braces don’t reverse the curve but can help slow it down and prevent or delay surgery.
For children who no longer walk, custom wheelchair seating is another tool. Molded seats with lumbar and side support can improve sitting comfort, reduce fatigue, and protect skin and posture throughout the day. A physiotherapist or occupational therapist with experience in FA can guide these choices.
Surgical intervention
If the spinal curve is closer to 50 degrees, or if your child has poor balance while sitting or trouble controlling their head, scoliosis surgery may be recommended, especially in a growing child.
The most common procedure is spinal fusion, which often uses metal rods to join two or more vertebrae and hold the spine in a straighter position. The goal is to correct the curve and stabilize the spine to prevent the curve from getting worse.
As FA can also affect the heart, breathing, and coordination, surgery planning should involve a multidisciplinary team. This may include a cardiologist, pulmonologist, neurologist, orthopedic surgeon, and anesthesiologist. A full presurgical workup helps reduce risks and create the safest possible plan.
After surgery, the focus is on careful recovery. Your child may need help with pain management, breathing support, and gentle movement as they regain strength.
Early physiotherapy can help with safe mobility and seating. Ongoing follow-up is also important to detect changes in heart function or spinal alignment over time.
Living with scoliosis
If you’re a teenager with Friedreich’s ataxia, or a parent of a younger child, living with scoliosis can bring its own set of physical and emotional demands.
When surgery is delayed or avoided due to age, medical risks, or other factors, there are ways to support everyday comfort, movement, and confidence.
Physiotherapy
Physical therapy may help with posture, flexibility, and muscle conditioning.
While it won’t correct the curve, regular movement can help ease stiffness and support overall well-being.
Seating adaptations
Proper seating can help manage scoliosis and prevent pain or skin pressure for children and teens who use wheelchairs. Custom-molded seating systems with lateral and lumbar support can also improve comfort, posture, and breathing.
A seating assessment by a specialist can help identify what works best for your or your child’s needs and changes over time.
Mobility aids
As scoliosis progresses, walking may become more difficult.
Assistive equipment like a walker, rollator, or wheelchair may help teens stay more independent, or give your younger child more energy to enjoy everyday activities.
Emotional support
A visible curve or back brace can affect how your child or teen feels about their body. Scoliosis may also cause pain or fatigue that interferes with school, social life, or sleep.
Talking with a counselor, joining a support group, or simply having someone listen can help you or your child feel less alone.
The proper care and support can go a long way in helping young people with FA and scoliosis live more comfortably and navigate daily life more easily.
Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.