Living with Dermatofibrosis lenticularis disseminata
An inherited condition mainly affecting the skin and bones, with small skin lumps and spotted bones on X-ray.
Understanding Dermatofibrosis lenticularis disseminata
It causes small, noncancerous skin lumps called connective tissue nevi, which tend to appear in childhood. It also causes spots of denser bone (osteopoikilosis) that appear as bright spots on X-rays. It is a disorder of connective tissue.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Skin lumps (connective tissue nevi)
- Spotted bones on X-ray (osteopoikilosis)
- Scoliosis
- One leg different in length or width
- Moles (nevi)
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.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- 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 Coalition for Heritable Disorders of Connective Tissue
- 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 doesn't name a gene. It lists autosomal dominant inheritance, so a changed copy of the gene from one parent can be enough.
Also known as: bos; buschke-ollendorf syndrome; buschke-ollendorff syndrome; dermato-osteopoikilosis; dermatofibrosis lenticularis disseminata with osteopoikilosis; dermatoosteopoikilosis
Patient organizations
- Coalition for Heritable Disorders of Connective TissueDermatofibrosis lenticularis disseminata · United States
You are more than your diagnosis
Perspectives from people navigating life with Dermatofibrosis lenticularis disseminata.
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- Recruiting studies from ClinicalTrials.gov
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