Living with Nephrogenic systemic fibrosis
A condition that mainly affects the skin, with swelling and tightening, linked to a type of contrast dye used in MRI.
Understanding Nephrogenic systemic fibrosis
Symptoms can include swelling and tightening of the skin that gets worse over time. This can sometimes cause tight joints (contractures). Itching is also common. Being exposed to gadolinium-containing contrast dyes during an MRI has been identified as a significant risk factor.
Signs & symptoms
GARD doesn't list a symptom list, but the summary describes these features:
- Swelling of the skin
- Tightening of the skin that worsens over time
- Tight joints (contractures)
- Itching (pruritus)
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
Specialists who may be involved include skin, hair, and nail specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Skin, hair, and nail specialists (dermatologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 Global Fibrosis Foundation 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
Exposure to gadolinium-containing contrast dyes used in MRI has been identified as a significant risk factor.
Also known as: nephrogenic fibrosing dermopathy
Patient organizations
- Global Fibrosis FoundationNephrogenic systemic fibrosis · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Nephrogenic systemic fibrosis.
Explore research for Nephrogenic systemic fibrosis
Explore actively recruiting Nephrogenic systemic fibrosis studies with HealthSpark.
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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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