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This disorder is called Neurofibromatosis. It has 3 variants, NF1, NF2 and Schwannomatosis, which vary.

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Neurofibromatosis 1 is caused by a mutation in the MF1 gene in the 17th chromosome of a cell. It can happen while the fetus is growing. Neurofibromatosis 2 can be caused by a mutation in the 22nd chromosome of a cell. Schwannomatosis can be caused by mutations of genes that suppress tumors.

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Symptoms include:

Balance disorders, Hearing loss, Ringing ears, scoliosis, high blood pressure, chronic pain,  learning disabilities, lumps, among many other things. In Sever cases, it can cause breathing problems, cancer  and cardiovascular problems.

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There are many types of neurofibromatosis (NF1, NF2, Schwannomatosis)  which affect different people. It occurs in children, but it can affect people after the age of 20, with the symptoms appearing between 25 and 30. In general, it affects 1 in 3000 people.

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As of March 1st, 2021, there is no cure for Neurofibromatosis, however it can be controlled. The sooner it is discovered in a person, the better it is for the person. There is medication, like Koselugo, which can help people.

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There aren’t that many support groups for Neurofibromatosis, but there are some. These include:
Neurofibromatosis Mid-Atlantic
Advocure for NF2
Children's Tumor Foundation

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Prenatal tests do exist for Neurofibromatosis to detect whether offspring will have the condition. However, these are only required when the parents have the conditions.

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The cause of the disease has been identifies, and there are now some treatments. However, a group of scientists in Washington University have made the Neurofibromatosis Center, a place where they can study the disorder.

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Overall, these people can live in a difficult way, as they can have trouble with balance, speech, and can even have cancerous tumors later on in life. What happens in the future depends on what kind of Neurofibromatosis you have, whether it is NF1, NF2, or Schwannomatosis.

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Washington University Neurofibromatosis Center: nfcenter.wustl.edu/research

Mayoclinic Website: mayoclinic.org/diseases-conditions/neurofibromatosis/symptoms-causes/syc-20350490

Wikipedia: en.wikipedia.org/wiki/Neurofibromatosis