#Nevus outreach

[redactedonyt]

Here’s a rant about my disability, if you’re not interested feel free to not read.

I’ve been disabled my whole life with LCN. If you aren’t aware of what it is, it’s a buildup of cells (for me on my back and shoulders) that doesn’t have sweat glands and counts as benign skin cancer that ends up being itchy and hot. Imagine it as wearing an extra jacket that can’t be taken off, and that’s as close as someone can get to the feeling of it. For what it looks like; it’s basically reverse Vitiligo, places of dark skin buildup that can be either bumpy or hairy depending on the type.

It’s always bittersweet to see art and toys with vitiligo and some other skin conditions, cause I know that I’ll never have that experience of seeing someone with Nevus in common media. While vitiligo got over the stigma of being “ugly” (which it’s not, y’all are beautiful) the community around Nevus will never get that recognition. Cause it can’t be made pretty easily, it can’t really be drawn normally at all.

I’m glad more people get recognition now, but I’ll never get that experience….

[cancersfakianakis1]

New insights into neurocutaneous melanosis

Abstract

Background

Neurocutaneous melanosis is a rare disorder in which children with large cutaneous melanotic nevi have associated melanosis in the brain. Although many affected children have structurally normal brains, some have associated developmental disorders or brain anomalies.

Objectives

To determine the range of extent of brain melanosis as assessed by magnetic resonance imaging (MRI) and to investigate the frequency and types of associated brain anomalies.

Materials and methods

We retrospectively reviewed brain and spine MRIs of 80 patients with congenital melanocytic nevi (range: 1 day to 22 years of age) affiliated with Nevus Outreach Inc. from 1998 to 2017. Central nervous system (CNS) melanosis was diagnosed when a mass with abnormal parenchymal T1 hyperintensity was seen. The locations of abnormal signal, associated malformations, the presence of contrast enhancement and, in patients with more than one MRI, changes over time were recorded. Associations among findings were analyzed using chi-square test or Fisher exact test.

Results

Brain abnormalities were identified in 33 patients. The most common finding was melanosis in the amygdala, which was found in 31 patients (an isolated finding in 14 patients). Nineteen patients had melanosis in the brainstem, cerebellum, cerebral cortex or thalamus. Cerebral and/or spinal leptomeningeal enhancement was uncommon (five patients). Hindbrain melanosis was associated with cerebellar and pontine hypoplasia (P=0.012). Brain melanosis was most easily seen on T1 images prior to myelination; reduced/loss of visibility was noted as the CNS matured.

Conclusion

Brain melanosis is a common manifestation in children with large cutaneous melanotic nevi, most commonly found in the anterior temporal lobes (amygdala), brainstem, cerebellum and cerebral cortex. Hindbrain melanosis is associated with hypoplasia of the affected structures. Early imaging is optimal to provide the greatest sensitivity for diagnosis and to guide proper management.

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