Living with Keratosis follicularis spinulosa decalvans
A rare inherited skin condition with thick, rough skin and loss of eyebrows, eyelashes, and hair, starting in childhood.
Understanding Keratosis follicularis spinulosa decalvans
It is a form of ichthyosis, a group of inherited skin conditions. The face, neck, and forearms are often affected. Thickened skin comes with loss of eyebrows, eyelashes, and hair on the face and head. Allergies, light sensitivity, and inflammation of the cornea may also occur. It starts in childhood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Thick, rough skin bumps around hair follicles
- Red cheeks
- Itching
- Slowly worsening hair loss with scarring on the scalp
- Sparse eyebrows and eyelashes
- Inflamed hair follicles (folliculitis)
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 genetic specialists and skin, hair, and nail specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Foundation for Ichthyosis and Related Skin Types may keep lists of experts for this condition.
Care & treatment
- Care team
- Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Expert lists: Foundation for Ichthyosis and Related Skin Types
- 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 Foundation for Ichthyosis and Related Skin Types 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
KFSD is thought to be caused by changes in the SAT1 gene and inherited in an X-linked way, meaning the gene is on the X chromosome. GARD also lists autosomal dominant and recessive inheritance.
Also known as: keratosis follicularis spinulosa decalvans cum ophiasi; keratosis pilaris decalvans
Patient organizations
- Foundation for Ichthyosis and Related Skin TypesKeratosis follicularis spinulosa decalvans · United States
- Scarring Alopecia FoundationKeratosis follicularis spinulosa decalvans · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Keratosis follicularis spinulosa decalvans.
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