Living with Ehlers-Danlos syndrome, fibronectinemic type
A very rare type of Ehlers-Danlos syndrome described in one family, with platelet problems and a fibronectin difference.
Understanding Ehlers-Danlos syndrome, fibronectinemic type
Ehlers-Danlos syndromes are a varied group of connective tissue conditions with loose joints and stretchy skin. Type X has been described in only one family. The age of onset is about 13 to 25 years.
Signs & symptoms
GARD doesn't list specific symptoms for this condition separately, but the summary describes these features:
- Loose, flexible joints
- Stretchy skin
- Platelet dysfunction (affects clotting)
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
Ehlers-Danlos Society 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: Ehlers-Danlos Society
- 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 Ehlers-Danlos Society and other patient organizations
- 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
GARD lists autosomal recessive inheritance, meaning a child inherits a changed copy of the gene from each parent. It doesn't list a specific gene.
Also known as: eds x; ehlers-danlos syndrome type 10; ehlers-danlos syndrome type 10 (formerly); ehlers-danlos syndrome with platelet dysfunction from fibronectin abnormality; ehlers-danlos syndrome, fibronectin-deficient; ehlers-danlos syndrome, type x
Patient organizations
- Ehlers-Danlos SocietyEhlers-Danlos syndrome, fibronectinemic type · United States
- Coalition for Heritable Disorders of Connective TissueEhlers-Danlos syndrome, fibronectinemic type · United States
- EDS AwarenessEhlers-Danlos syndrome, fibronectinemic type · United States
You are more than your diagnosis
Perspectives from people navigating life with Ehlers-Danlos syndrome, fibronectinemic type.
Explore research for Ehlers-Danlos syndrome, fibronectinemic type
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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