Bone & Joint Care
The information on this page represents the recommended standard of care for Duchenne muscular dystrophy. Most of the care recommendations also apply to Becker muscular dystrophy, but at older ages. Most, but not all, people with Duchenne are males—but the care recommendations apply to both males and females with Duchenne.
If you don’t understand any of the medical terms and concepts, ask your healthcare providers. Take notes and ask questions during your clinical visits.
Bone & Joint Facts to Remember
- People with Duchenne often have weak bones, especially if they are taking steroids.
- It is important to have the right amount of calcium and vitamin D to make bones stronger. Ask your neuromuscular care team about the correct amount.
- Your doctor should watch your spine closely.
- If you have back pain, you should see your doctor.
- Although rare, fat embolism syndrome (FES) should be considered if shortness of breath or neurological symptoms develop after falls, fractures, or other trauma.
People who have Duchenne often have weak bones. Steroids (corticosteroids) also affect bone health. Steroids decrease the bone mineral density, causing them to become thinner and weaker. This is known as osteoporosis. There are a few topics to be aware of regarding bone health and Duchenne.
Importance of Calcium and Vitamin D
It is important that people with Duchenne have the correct amount of calcium and vitamin D to optimize their bone health and lessen the risk of fractures from happening. Ask your doctor and dietitian about foods rich in vitamin D and calcium, and whether supplements are needed.
Monitoring Bone Health
Take spinal X-rays
Make sure your doctor checks your spine during every visit for signs of a curve. Have spinal X-rays every year while you are still growing. Your doctor should watch your spine closely after you stop walking to look for scoliosis. If the curve in your back (scoliosis) is severe, you should have X-rays at least every six months. This way your doctor can keep close surveillance on your spine and decide if you need any interventions (i.e. surgery).
Take lateral spine X-rays
Lateral spine X-rays should also be done every 1-2 years after starting steroid to check for vertebral compression fractures that may not be causing symptoms. Lateral spine X-rays can also measure the width of your vertebrae (also known as your Ganat score) to further evaluate your bone health.
Your doctor should also do an X-ray if you have a problem or complaint, such as back pain, to check to make sure there are not vertebral compression fractures.
Have a dual energy X-ray absorptiometry (DEXA or DXA scan)
It is important to keep close surveillance on the status of your bone health. You may need DEXA scans every 2-3 years after starting steroids. DEXA scans measure your bone density and can tell how high risk your child is of fracturing bones.
Have blood and urine tests
Blood and urine tests provide information about vitamin D and calcium levels and may help your doctor or dietician recommend doses of vitamin D and calcium supplements, if they are needed. Vitamin D levels should be checked annually.
Prevention of fractures
Do weight-bearing exercises and stretches
Weight-bearing exercises recommended by your doctor or physical therapist can help your bones stay strong for a longer period of time. Starting when you are young, your muscles and joints should be stretched 4 to 6 times a week. This can help delay and minimize your joints becoming locked in one position (contractures). Ask your doctor and physical therapist about helpful stretches and exercises to do.
Fractures due to osteoporosis
As bones become weak and thin (osteoporosis), there is more chance of broken bones (fractures). In Duchenne, the most common types of fractures are in the legs and spine.
Long bone fractures (i.e. femur)
This type of fracture can happen when people with Duchenne fall or experience trauma. However, most fractures generally happen after ambulation is lost and may occur with very little trauma (a bump, changing position, being lifted, etc.). Learn more about managing leg fractures.
Spinal compression fractures
Some of the bones in the spine (vertebrae) may begin to collapse because they are thin, putting more pressure on other vertebrae and causing them to break. This is called a compression fracture. Steroids may slow down the development of scoliosis, but may increase the risk of compression fractures.
Risk of Fat Embolism Syndrome (FES) following fall/fractures/trauma
Although rare, fat embolism syndrome (FES) develops quickly, and the consequences are serious and life threatening. FES should be considered if shortness of breath or neurological changes occur (confusion, disorientation, and “not acting like themselves”) after a fall or other trauma. Learn more about the symptoms of FES you need to look out for, and what to do if your child falls, is bumped or dropped, and develops FES symptoms.
The progressive weakening of bones and their surrounding muscles may lead to orthopedic problems such as scoliosis and contractures. Your physical therapist and rehabilitation team can work with you to prevent these from happening using personalized stretching regimens, custom orthotics, and proper positioning (especially in your wheelchair).
If you are diagnosed with a fracture, it is best to see an orthopedic specialist who is familiar with Duchenne. If you have a leg fracture and were able to walk well before the fracture, ask the doctor if it is possible to have surgery (internal fixation) rather than casting (external fixation). Surgery may help preserve muscles so that you can start walking sooner compared to casting. Learn more about managing leg fractures.
Bisphosphonates are medications given to treat osteoporosis. Bisphosphonates can be given orally (by mouth) or through an IV. The goal of bisphosphonate therapy is to increase the density of the bones of the body, including the vertebrae in the spine. Increasing the density of bones puts you at less risk for a fracture.
In addition to bisphosphonates, other therapies may be appropriate for adults. More information may be found on the medication and supplements page.
Meetings & Publications
Osteoporosis and Bone Health Meeting
In 2016, PPMD convened a meeting of global experts in Duchenne osteoporosis and bone health. A published summary of that meeting can be found here.