Dermatology · PANCE / PANRE

Café-au-Lait Macules and Neurofibromatosis Associations

Tan-brown macules that, when numerous or large, prompt evaluation for NF1 and related disorders.

Also known as: CALM, café-au-lait spot, NF1, neurofibromatosis type 1, von Recklinghausen disease

Overview

Café-au-lait macules (CALMs) are well-circumscribed, uniformly pigmented light- to dark-brown macules and patches present from birth or acquired in early childhood. Single small CALMs are common and benign, but multiple or large CALMs may herald neurofibromatosis type 1 (NF1), Legius syndrome, McCune-Albright syndrome, or other genodermatoses.

Epidemiology

Approximately 10-30% of healthy individuals have at least one CALM. NF1 occurs in about 1 in 3,000 births (autosomal dominant, full penetrance, variable expressivity, 50% de novo mutations of the NF1 gene on 17q11.2). Legius syndrome — clinically similar to mild NF1 — is rarer and due to SPRED1 mutations.

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Risk factors

  • Family history of NF1 or related disorder
  • De novo mutation (about half of NF1 cases)
  • Race-independent prevalence; CALMs may appear more prominent on lighter skin
  • Genetic mosaicism (segmental NF1) — CALMs and neurofibromas restricted to a body segment

Pathophysiology

CALMs result from increased melanin production by basal melanocytes with normal melanocyte density; on biopsy, giant melanosomes ('macromelanosomes') may be seen. NF1 is caused by loss-of-function mutations in the NF1 tumor-suppressor gene encoding neurofibromin, a Ras-GAP; loss accelerates Ras-MAPK signaling, predisposing to a wide range of neural and other tumors (neurofibromas, optic gliomas, malignant peripheral nerve sheath tumors).

Clinical presentation

Symptoms

  • CALMs alone are asymptomatic
  • NF1: progressive cutaneous and subcutaneous neurofibromas in adolescence and adulthood, learning disabilities, scoliosis, short stature, headaches, vision changes (optic glioma), hypertension (renal artery stenosis or pheochromocytoma)
  • Family members may have similar features (autosomal dominant inheritance)

Signs / physical exam

  • CALMs: 0.5-20 cm uniformly tan-brown, sharply demarcated macules/patches
  • NF1 signs: axillary and inguinal freckling (Crowe sign), Lisch nodules (iris hamartomas), cutaneous and plexiform neurofibromas, sphenoid wing dysplasia, tibial pseudarthrosis
  • Macrocephaly, short stature in some patients
  • Hypertension or thyroid mass (medullary thyroid carcinoma in MEN2 — distinct)

Classic findings

Six or more CALMs ≥5 mm prepubertal (or ≥15 mm postpubertal), axillary/inguinal freckling, Lisch nodules, neurofibromas in NF1.

Differential diagnosis

  • Legius syndrome — Multiple CALMs and axillary freckling without neurofibromas, Lisch nodules, or tumor predisposition; SPRED1 mutation; gene testing distinguishes
  • McCune-Albright syndrome — Few large CALMs with 'coast of Maine' (irregular) borders, polyostotic fibrous dysplasia, precocious puberty; GNAS mosaic mutation
  • Neurofibromatosis type 2 (NF2) — Bilateral vestibular schwannomas, meningiomas, ependymomas; CALMs less prominent
  • Constitutional mismatch repair deficiency (CMMRD) — Multiple CALMs + childhood-onset hematologic, brain, or GI cancers; biallelic MMR gene mutations
  • Becker nevus — Unilateral, large, hairy, irregular tan patch on shoulder/back; appears in adolescence
  • Lentigines (LEOPARD syndrome) — Many small dark macules; cardiac, ECG, growth, and genital findings; PTPN11 mutation
  • Pigmentary mosaicism (segmental pigmentation disorders) — Hyper- or hypopigmented patches following Blaschko lines or broad-band patterns; mosaic genetic change

Diagnostic workup

Diagnostic criteria

Revised NIH/NF1 criteria (Legius et al., 2021) — at least two of the following: ≥6 CALMs >5 mm prepubertal (>15 mm postpubertal); ≥2 cutaneous/subcutaneous neurofibromas or one plexiform neurofibroma; axillary or inguinal freckling; optic pathway glioma; ≥2 Lisch nodules or ≥2 choroidal abnormalities on OCT; distinctive bony lesion (sphenoid dysplasia, tibial pseudarthrosis, long-bone bowing); heterozygous pathogenic NF1 variant in normal tissue; or first-degree relative meeting NF1 criteria.

Labs

  • Genetic testing (NF1 gene sequencing and deletion/duplication analysis; SPRED1 testing for suspected Legius syndrome) when criteria are met or uncertain
  • Family genetic counseling
  • Endocrine evaluation if precocious puberty or growth abnormalities

Imaging

  • Brain and orbital MRI when neurologic or visual symptoms or for surveillance per current NF1 guidelines
  • Spine MRI for scoliosis or neurologic signs
  • Skeletal survey if McCune-Albright suspected (polyostotic fibrous dysplasia)
  • Imaging-directed evaluation of plexiform neurofibromas (whole-body MRI in select cases)

Diagnostic algorithm

FeatureIsolated CALMsNF1Legius SyndromeMcCune-Albright
CALMs1-2 small≥6, ≥5 mm prepubertalMultiple, NF1-likeFew, large, 'coast of Maine'
FrecklingAbsentAxillary/inguinalOften presentAbsent
NeurofibromasAbsentCutaneous + plexiformAbsentAbsent
Lisch nodulesAbsentCommon (>90% adults)AbsentAbsent
Tumor riskNoneOptic glioma, MPNST, breastMinimalPolyostotic fibrous dysplasia
EndocrineNonePheo (rare), HTNNonePrecocious puberty, GH excess
GeneNF1 (17q11.2)SPRED1GNAS mosaic
InheritanceAD (50% de novo)ADMosaic, non-inherited
CALM-associated syndromes — recognizing patterns beyond isolated café-au-lait macules.

Treatment

First-line

  • No specific therapy for isolated CALMs; reassurance and observation
  • NF1: multidisciplinary surveillance — annual physical exam, ophthalmology (yearly until age 8, then less frequent), neurodevelopmental assessment in childhood, blood pressure monitoring, dermatology surveillance for new neurofibromas and MPNST signs
  • Symptomatic neurofibromas: surgical excision when painful, cosmetically distressing, or functionally limiting
  • Selumetinib (MEK inhibitor) — FDA-approved 2020 for symptomatic inoperable plexiform neurofibromas in pediatric NF1 (SPRINT trial, Gross et al., NEJM 2020)
  • Pain control, physical therapy, and psychosocial support

Second-line / adjunct

  • Q-switched and pico-second lasers for cosmetic treatment of selected CALMs (variable response, frequent recurrence)
  • MEK inhibitors (selumetinib, trametinib) for plexiform neurofibromas; trials ongoing for cutaneous neurofibromas
  • Surveillance for malignant peripheral nerve sheath tumor (MPNST) — sudden growth, new pain, or neurologic deficit in a known neurofibroma warrants prompt MRI/PET and biopsy
  • Bisphosphonates and orthopedic management for fibrous dysplasia in McCune-Albright; treat precocious puberty per pediatric endocrinology

Complications

  • NF1: optic glioma (15-20% of children, often indolent), learning disabilities and ADHD (30-50%), scoliosis, hypertension (renal artery stenosis, pheochromocytoma), MPNST (lifetime risk ~8-13%), cardiovascular malformations, breast cancer (earlier onset in women with NF1)
  • McCune-Albright: pathologic fractures, deformity, precocious puberty, hyperthyroidism, Cushing syndrome, hypophosphatemia
  • Legius syndrome: generally benign course; no tumor predisposition like NF1
  • Psychosocial: stigma from visible neurofibromas; depression and anxiety

PANCE pearls

  • Six or more CALMs ≥5 mm in a child should prompt evaluation for NF1; remember the postpubertal threshold rises to ≥15 mm.
  • Axillary or inguinal freckling (Crowe sign) is a high-yield clinical clue distinguishing NF1 from isolated CALMs.
  • Legius syndrome mimics mild NF1 (CALMs + freckling) but lacks neurofibromas, Lisch nodules, and tumor predisposition — genetic testing differentiates.
  • Sudden growth, new pain, or neurologic deficit in a known neurofibroma is concerning for MPNST and warrants urgent imaging and biopsy.
  • Selumetinib is the first FDA-approved targeted therapy for symptomatic, inoperable plexiform neurofibromas in pediatric NF1 (SPRINT trial).
  • Always evaluate first-degree relatives — NF1 is autosomal dominant with full penetrance and variable expressivity.

References

  • Revised NF1 Criteria — Legius E et al. Revised diagnostic criteria for neurofibromatosis type 1 and Legius syndrome: an international consensus recommendation (Genet Med 2021)
  • SPRINT Trial — Gross AM et al. Selumetinib in Children with Inoperable Plexiform Neurofibromas (NEJM 2020)
  • AAP/Children's Tumor Foundation — Miller DT et al. Health supervision for children with neurofibromatosis type 1 (Pediatrics 2019)

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