11/05/2026
NEUROFIBROMATOSIS AWARENESS MONTH
Neurofibromatosis (NF) refers to a group of genetic conditions involving the development of tumors that may affect the brain, spinal cord, and the nerves that send signals between the brain and spinal cord and all other parts of the body. Most tumors are non-cancerous (benign), although some may become cancerous (malignant).
• About half of people with NF inherit the condition from one of their parents.
• The other half develops NF due to a spontaneous (also called sporadic) change in the gene.
• Each child who inherits the NF1 genetic variant will have symptoms of the condition. •There is a 50% chance that a person with NF1 will pass it on to their children.
NB: It's not completely known why tumors develop in people with NF. However, tumor development is partly due to genetic changes that affect proteins responsible for controlling the growth of nervous system cells. Without the normal function of these proteins, cell growth increases, leading to the formation of tumors. {Information from NIH}
WHY IS SPIRITUAL AND MENTAL HEALTH ESSENTIAL?
Neurofibromatosis (NF) is a lifelong genetic condition that causes tumors to grow on nerves. It’s not just physical — the uncertainty, pain, and visibility of NF hit mental and spiritual health hard. Here’s why those two pieces are essential, not “nice to have”:
MENTAL
When mental health isn’t addressed, patients are less likely to stick to checkups, MRIs, or treatments. Stress also worsens pain perception and immune function.
SPIRITUAL
Spiritual health helps people make meaning of a lifelong condition
“Spiritual” doesn’t have to mean religious. It’s about purpose, hope, and connection to something bigger when your body feels out of control.
Studies show patients with chronic genetic conditions who report stronger spiritual well-being have lower depression scores and better treatment adherence, even when physical symptoms are severe.
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