We specialize in treating rare conditions like arthrogryposis with a team approach.
Arthrogryposis is a number of rare muscle disorders that can cause stiff joints and abnormal muscle development in children. It occurs in about 1 in every 3,000 children. The name comes from the Greek word meaning “curved joint." Children with arthrogryposis are born with a limited range of motion in any of all of the following:
In some cases, motion is so limited that the joint is actually fixed, meaning there is no range of motion at all. There is no known cure for arthrogryposis, and the exact cause of arthrogryposis is unknown.
Shriners Children's experienced physicians have treated thousands of children with arthrogryposis. We bring a proven, innovative, team approach to treatment that is focused on one main goal: giving children the best quality of life so they can achieve their goals.
Your physician will confirm a diagnosis of arthrogryposis using blood test, X-rays or muscle biopsies. Our advanced motion analysis center technicians can help determine the correct course for care. Treatment options may include splinting, casting, physical therapy and, in some circumstances, surgery.
Our Family-Centered Care
Our philosophy is to consider all of the options for your child. Together, we’ll create a treatment plan that is the best fit for your child’s age, the severity of their condition and the activities they love.
A diagnosis of arthrogryposis can be stressful for the entire family. Those stressors can include fears about your child's future and insecurity about making the right decisions. Be reassured that if your child is diagnosed with arthrogryposis, you'll have a Shriners Children's care team to guide you. Your child’s surgeons, physical and occupational therapists, and other care providers understand the concerns of children and parents navigating this journey.
We’ve seen children with arthrogryposis successfully progress through childhood, as they become active preschoolers, elementary school gymnasts, and teens confidently socializing with friends and succeeding in life.
Specific treatments and services may vary by location. Please contact a specific location for more information.
Signs and Symptoms
Symptoms vary widely, but some of the common ones may include:
- The range of motion of the joints in your child’s arms and legs may be limited or fixed.
- Your child’s shoulders may be rotated inward.
- They may have abnormal elbow extension.
- They may be able to flex her wrists and fingers in ways that appear abnormal.
- Your child could have dislocated hips.
- They may have clubfoot.
Types of Arthrogryposis
There are four main types of arthrogryposis:
Amyoplasia: Babies diagnosed with amyoplasia have dense fibrous tissue and fat instead of skeletal muscle. This leads to a loss of muscle development and poor range of motion and deformity in most joints.
Distal arthrogryposis: This type affects only several joints, usually in the hands and feet, and range of motion may be mildly limited.
Classic arthrogryposis: This type usually affects the hands, wrists, elbows, shoulders, hips, feet and knees with varying severity. The most severe cases can affect almost every joint, including the back and jaw. A loss of joint motion is frequently accompanied by muscle weakness.
Syndromic arthrogryposis: This type affects internal organs, as well as the muscle and joint systems. It can cause breathing problems, feeding problems, speech disorders and, in some cases, development delays.
The main goal of treatment for arthrogryposis is to help your child’s joints move as normally as possible. This means improving their flexibility, their strength and the way their bones line up. For your child’s lower body, the focus is on working with their feet and legs so they may be able to stand and walk. For their upper body, the focus is on working with their hands and arms so they may be able to do things on their own.
Splints – Splints are made to increase the stretching exercises and increase the range of motion. Casting is frequently done to improve the position of your child's foot. Removable splints can be used on you child's knees and feet to allow for exercises, but some children experience great results by wearing splints at night.
Surgery – Your child may require surgery to address any deformities. Surgery is generally recommended if your child would benefit from more range of motion after therapy is finished. Surgical procedures to help arthrogryposis include:
- A procedure in which your Shriners Children's surgeon cuts through a bone to improve how joints line up. This is called an osteotomy.
- Limb lengthening surgery.
Innovative Arthrogryposis Research
In 2019, Shriners Children’s launched a research program titled Registry for Arthrogryposis: Epidemiology, Etiology, Intervention, and Genomics. The project aims to identify causes and risk factors of arthrogryposis, help address the needs of children with arthrogryposis and their family members, and gain a better understanding of treatments for arthrogryposis, specifically their timing and effectiveness.
At least 300 patients with arthrogryposis are projected to participate throughout the four-year study.
Shriners Children’s has a rich history of arthrogryposis research dating back to 1982, but due to the rarity of the condition, much remains unknown. The insights gathered in the study will provide a better understanding of the prevalence, classifications and clinical changes of the condition over time.
All eligible participants who agree to participate in the study complete questionnaires about pain, mobility, daily activities and quality of life. The family provides information on the pregnancy and delivery of their child, past medical history and previous treatment that their child had received. Additionally, Shriners Children's researchers take photographs and review the child's medical records. For some eligible patients, a blood or saliva sample are sent to the Shriners Genomics Institute in Tampa, Florida, for analysis.
If you make it to Shriners Children's, you can take a deep breath. They're going to take care of you in every way possible.