Should I worry about café-au-lait spots?

Café au lait spots are usually harmless and don't cause any uncomfortable symptoms or complications. But you shouldn't ignore these spots, especially if you have more than a handful on your body. This could indicate an underlying genetic disorder.
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When should I worry about café-au-lait spots?

When should I see my healthcare provider? Visit your healthcare provider if you notice your child's café-au-lait (CAL) spots appear swollen, bumpy or lumpy to the touch or if they increase in size or number. It's common to have a few CAL spots, but more than six spots can be a sign of an underlying condition.
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Can café-au-lait spots be normal?

Café au lait spots are harmless and normal, with some people having anywhere from one to three spots. But sometimes, these spots can indicate an underlying genetic problem.
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How rare are café-au-lait spots?

Approximately 10% of the general population has one or two café-au-lait spots. However, having more than 5 café-au-lait spots (referred to as multiple CALS) is rare.
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What do café-au-lait spots indicate?

Although these colored spots on the skin can be harmless, having six or more café au lait spots with freckles under the arm or around the groin could indicate an underlying genetic problem called neurofibromatosis type 1. This is a disorder that can affect the skin, nerves, and eyes.
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Ask Kate! Do my son's café au lait spots mean he has NF1?



Can café-au-lait spots get bigger?

Cafe au lait (ka-FAY o lay) birthmarks are flat areas of darkened skin, anywhere from tan to dark brown. They are permanent and very common. They can occur anywhere on the body, and the size increases as the child grows. Usually, no treatment is needed.
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Can you have multiple café-au-lait spots without neurofibromatosis?

Abstract. Multiple café-au-lait spots have been observed in successive generations of several families without any other manifestations of neurofibromatosis (NF) or any other systemic disorder. The café-au-lait spots in these families segregate as an autosomal dominant trait.
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Do café-au-lait spots always mean NF1?

The most common symptom of NF1 is the appearance of painless, coffee-coloured patches on the skin, called café au lait spots. However, not everyone with café au lait spots has NF1. The spots can be present at birth or develop by the time a child is 3 years old.
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When is NF1 usually diagnosed?

Neurofibromatosis 1 (NF1) is usually diagnosed during childhood. Signs are often noticeable at birth or shortly afterward and almost always by age 10. Signs and symptoms are often mild to moderate, but can vary in severity.
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Is NF1 life threatening?

In most cases, symptoms of NF1 are relatively mild, allowing patients to live normal and productive lives. However, the disorder can also be debilitating and, in some cases, life-threatening. NF1 can lead to problems within various systems, organs and functions of the body including: Skin, bone and eye abnormalities.
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Does NF1 get worse with age?

Typically, adults with NF1 will develop more neurofibromas over time. They may grow for a period of time and then stop growing. In addition, they may change in shape or color as they grow. Sometimes, they can also be associated with itching or slight discomfort when bumped.
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Can you have NF1 without knowing?

What Are the Signs & Symptoms of Neurofibromatosis Type 1? Most newborns with neurofibromatosis type 1 have no symptoms, but some have curved lower leg bones. By their first birthday, most children with NF1 have several skin spots, called café-au-lait ("coffee with milk") spots because of their color.
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Can you live a normal life with neurofibromatosis?

Children and adults with NF1 can have a variety of symptoms and medical problems which can change across a lifespan. Most people with NF1 have a normal life expectancy. Because many of the other clinical features of NF1 develop as an individual gets older, getting the correct diagnosis may take several years.
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How do I know if my baby has neurofibromatosis?

Light brown spots on the skin called café-au-lait spots. These are the most common signs of NF, and they often appear at birth or in the first years of life. They're harmless, but if your child has more than six, she probably has NF1. Freckles in the armpits or groin area also are signs of NF1.
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What can be mistaken for neurofibromatosis?

Legius syndrome also is called a neurofibromatosis 1-like syndrome because its symptoms are similar to NF1. Individuals with Legius syndrome have skin problems including brown birthmarks, called cafe-au-lait spots, and freckling, as well as mild learning problems and a larger head.
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How big do café-au-lait spots have to be?

Café au lait spots are flat lesions that are typically the color made by adding milk to coffee. They may vary in size from a few millimeters, as in axillary freckling, to large macules that measure more than 10 cm in size.
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Who is most likely to get neurofibromatosis?

The only true risk factor for developing neurofibromatosis is having a parent who also has the condition. In nearly half of all cases of type 1 and type 2 neurofibromatosis, and in around 15 percent of schwannomatosis cases, the condition is passed down from parent to child.
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How long is the average lifespan of a person with neurofibromatosis?

Mean and median ages at death for persons with NF1 were 54.4 and 59 years, respectively, compared with 70.1 and 74 years in the general population.
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What is the life expectancy of someone who has neurofibromatosis?

If there are no complications, the life expectancy of people with NF is almost normal. With the right education, people with NF can live a normal life. Although mental impairment is generally mild, NF1 is a known cause of attention deficit hyperactivity disorder.
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Can a dermatologist diagnose NF1?

NF1 is also the most common cancer predisposition syndrome. The diagnosis is often made by dermatologists who also operate on cutaneous neurofibroma tumours.
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What happens if neurofibromatosis is left untreated?

These tumors originate from Schwann cells, which protect your nerve cells and neurotransmitters. Spinal cord schwannomas are common in those with NF2. If left untreated, they can cause paralysis.
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How do you get rid of NF1 bumps?

There is no known treatment or cure for neurofibromatosis or schwannomatosis. Medication can be prescribed to help with pain. In some cases, growths may be removed surgically or reduced with radiation therapy.
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Can neurofibromatosis turn cancerous?

The lifetime risk of cancer developing in a person with NF1 is estimated to be about 7%. This generally happens when a benign (non-cancerous) neurofibroma turns into a cancerous form called sarcoma, which grows much faster, invades nearby structures, and sometimes metastasizes (spreads) to other areas of the body.
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Can NF1 cause leukemia?

Neurofibromatosis type 1 (NF1) is an autosomal dominant genetic disorder caused by mutations in the NF1 gene. Patients with NF1 have a higher risk to develop juvenile myelomonocytic leukemia (JMML) with a possible progression toward acute myeloid leukemia (AML).
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Can NF1 tumors be removed?

If cancerous tumors develop with neurofibromatosis—for example, malignant plexiform neurofibromas, which can develop in the arms, legs, or trunk—they can also be surgically removed. For cancerous tumors, surgery may be combined with other treatments for cancer.
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