Neurofibromatosis (NF) is an umbrella term for a group of rare, genetic conditions that cause tumors to grow on nerves throughout the body. NF is not a single diagnosis—it includes several distinct conditions, most commonly neurofibromatosis type 1 (NF1), NF2‑related schwannomatosis (NF2‑SWN), and schwannomatosis (SWN). While these conditions share some similarities, each affects the body differently and can involve a wide range of symptoms, complications, and outcomes.
NF is lifelong and highly variable. Some individuals experience mild symptoms, while others face more complex medical challenges over time. Understanding the type of NF, potential complications, and recommended care is an important step in advocating for appropriate monitoring, treatment, and support.
One in 2,000 people are born with an NF condition.
(All NF conditions Combined)
The Main Types of NF
Neurofibromatosis Type 1 (NF1) is the most common type of neurofibromatosis and is usually diagnosed in childhood, affecting approximately one in 2,500. Learn More
NF2-Related Schwannomatosis (NF2-SWN) is formerly known as neurofibromatosis Type 2 (NF2). This type of NF is characterized by the growth of tumors on the nerves responsible for hearing and balance, affecting approximately one in 25,000 Learn More
Schwannomatosis (SWN) is a rare form of NF that causes tumors called schwannomas to develop on nerves throughout the body, affecting approximately one in 40,000. Learn More
- ✅ Common / hallmark feature
- ⚠️ Possible / occurs in some people
- ❌ Uncommon or not typical
NF1 vs. NF1-SWN vs SWN Features and Symptoms
| Feature/Symptom | NF1 | NF2-SWN | SWN |
|---|---|---|---|
| Tumors on nerves | ✅Common (neurofibromas, plexiform neurofibromas, gliomas) | ✅ Common (schwannomas, especially vestibular) | ✅ Common (schwannomas) |
| Café-au-lait spots | ✅ Very common, >6 | ⚠️ Sometimes, usually <6 | ⚠️ Sometimes, <6 |
| Skin neurofibromas | ✅ Common | ⚠️ Skin Schwannomas | ❌ Rare |
| Plexiform neurofibromas | ✅ Common | ❌ Not typical | ❌ Not typical |
| Hearing loss | ❌ Not typical | ✅ Common | ❌ Rare |
| Vestibular schwannomas | ❌ No | ✅ Hallmark feature | ❌ Typically Absent |
| Balance problems / dizziness | ❌ Rare | ✅ Common | ⚠️ Possible (depends on tumor location) |
| Chronic pain | ⚠️ Possible | ⚠️ Possible | ✅ Very common |
| Learning disabilities / ADHD | ✅ Common | ❌ Not typical | ❌ Not typical |
| Vision problems | ⚠️Possible (optic pathway gliomas) | ⚠️ Possible (cataracts, brain tumors) | ⚠️ Possible (tumor‑related) |
| Bone abnormalities | ⚠️Possible | ❌ Not typical | ❌ Not typical |
| Meningiomas / spinal tumors | ⚠️ Possible | ✅ Common | ❌ Rare |
| Typical age of onset | Childhood | Teens–young adulthood | Adulthood |
| Life expectancy | Often near normal | Variable | Often near normal |