Von Recklinghausen Syndrome (NFS) Neurofibromatosis Type 1 Symptoms:
The most common symptom of NFS is hair loss. Hair loss may occur at any age. Some people have no signs or symptoms while others experience it throughout their life span. There are many causes of hair loss including genetic, hormonal, environmental factors and even sun exposure. Hair loss can range from very mild to severe.
The severity of hair loss depends upon several factors such as the amount of melanin present in your body, how much time you spend outdoors, your diet and other lifestyle habits.
Some people with NFS do not experience any symptoms whatsoever. However, some people develop problems with their skin due to certain medications they take or because they have inherited a gene mutation which results in them having less melanin production than normal individuals. These people may suffer from psoriasis or eczema. Other people with NFS may experience other health issues such as diabetes mellitus, high blood pressure, osteoporosis and heart disease.
Hair loss can affect both men and women equally. It affects all races equally but tends to affect darker complexions more than lighter complexions. Women tend to notice hair loss earlier than men since their hormones are higher during puberty. In fact, males often don’t begin to notice hair loss until they are well into adulthood.
There is no cure for NFS but hair loss can be reversed by addressing the root cause. In some cases, hair loss is caused by poor diet or stress. Treating the underlying cause can help you reverse or slow down hair loss. If a medication you are taking is causing hair loss, your doctor may be able to prescribe an alternative or change your dosage. If you notice dandruff or dry skin, make sure to wash your hair and/or apply a moisturizer.
Von Recklinghausen Syndrome (NFS) Neurofibromatosis:
Von Recklinghausen is a genetic condition that causes tumors to develop along your nerves. Tumors can also develop in your bones and skin. This condition is extremely rare with only about 100 cases being reported. Because of this, there is limited information about the condition causing it to be very under-researched.
People who have von Recklinghausen usually experience neurological problems at a young age such as vision loss or even paralysis of limbs. These changes tend to occur rapidly over a few months or years. Additionally, people with NFS can suffer from tumors in different parts of the body. Common sites for tumors to occur include the skin, brain, eye and spinal cord.
There is no cure for NFS but treatments can help manage symptoms and reduce tumor size or even prevent new tumors from forming. Your doctor may recommend a combination of therapies including:
? Medication – Tumors can sometimes be treated with certain medications that help destroy or slow down their growth.
? Gamma-Interferon – High doses of gamma-interferon have been shown to be effective against NFS tumors in some cases.
? Surgery – Surgery is not the primary treatment for NFS but it can be useful in some cases. Your doctor may recommend surgery if you suffer from neurological problems that can’t be treated with medication. During surgery, your doctor will attempt to remove as much of the tumor as possible.
? Chemotherapy – Some doctors believe that chemotherapy may help slow tumor growth and reduce symptoms but research is limited.
? Cryotherapy – This treatment involves exposing a tumor to extreme cold in order to halt its growth.
? Laser Surgery – Laser surgery uses a beam of light to remove small areas of tissue. It can be used to destroy tumors or even cancers without leaving a scar.
? Stereotactic Radiosurgery – This treatment focuses high-energy radiation directly into a tumor. It is extremely accurate and new machines can treat places in the brain that were once inaccessable.
? Radiation Therapy – Radiation therapy uses high-energy rays to destroy tumors. It is commonly used to treat cancer but it can also be useful in the treatment of NFS.
Sources & references used in this article:
Multiple small intestinal stromal tumors with skeinoid fibers in association with neurofibromatosis 1 (von Recklinghausen’s disease) by T Ishida, I Wada, H Horiuchi, T Oka… – Pathology …, 1996 – Wiley Online Library
Neurofibromatosis type 1 or Von Recklinghausen’s disease by S Pinson, P Wolkenstein – La revue de médecine interne, 2005 – ncbi.nlm.nih.gov
Von Recklinghausen’s disease (neurofibromatosis) associated with malignant pheochromocytoma by E Okada, T Shozawa – Pathology International, 1984 – Wiley Online Library
Gastrointestinal manifestations of type 1 neurofibromatosis (von Recklinghausen’s disease) by CE Fluller, GT Williams – Histopathology, 1991 – Wiley Online Library
Von Recklinghausen′ s disease and pheochromocytomas by MCM Walther, J Herring, E Enquist, HR Keiser… – The Journal of …, 1999 – Elsevier