Living with Madelung deformity
A condition in which the wrist and forearm bones grow abnormally, causing a bump, pain, and limited wrist motion.
Understanding Madelung deformity
One forearm bone (the radius) stays short and bowed. The other (the ulna) keeps growing and can slip out of place, forming a bump. It is more common in females. A band of tissue called Vickers' ligament is also abnormal. It may occur on its own or as part of another condition.
Signs & symptoms
GARD doesn't list a separate symptom list, but its summary describes these symptoms:
- Less wrist movement
- Wrist pain
- Visible difference in how the wrist looks
- Bump on the wrist from the ulna
- Short, bowed forearm bone
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Little People of America may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: Little People of America
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Little People of America
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
It seems to result from both genetic and acquired factors, such as injury or overuse of the joint. In Leri Weill dyschondrosteosis, it is caused by changes or losses involving the SHOX gene. Some isolated cases may also involve SHOX changes.
Also known as: carpus curvus; madelung wrist deformity; madelung's deformity
Patient organizations
- Little People of AmericaMadelung deformity · United States
You are more than your diagnosis
Perspectives from people navigating life with Madelung deformity.
Explore research for Madelung deformity
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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