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Natural Help for Neurofibromatosis
Ketotifen or mast cell stabilizing herbs

Scientific articles:

Mast-cell stabilization to decrease neurofibroma growth. Preliminary experience with ketotifen.
Based on (1) the large numbers of mast cells present in neurofibromas, (2) the possibility that these mast cells contribute directly to neurofibroma growth, and (3) the ability of ketotifen therapy to stabilize (ie, block) mast-cell secretion, treatment with ketotifen was started in a patient with severe neurofibromatosis (NF) in August 1983. Subsequently, ten additional patients with one or more symptomatic neurofibromas were treated with comparable doses of ketotifen, 2 to 4 mg/d, orally administered for 30 to 43 months. This represents a total of 389 patient-months or 32.4 patient-years. All of these patients showed an unequivocal decrease in neurofibroma-associated pruritus and/or pain and tenderness; a consistent, but less-uniform, decrease in the rate of neurofibroma growth; and an unexpected improvement in overall sense of well-being, productivity, and general performance. It appears likely that mast-cell secretions do contribute to the growth and associated symptoms of neurofibromas, and that mast-cell blockers, such as ketotifen therapy, can retard this growth.

A controlled multiphase trial of ketotifen to minimize neurofibroma-associated pain and itching.
CONCLUSIONS:Pretreatment, treatment, and posttreatment levels of itching, pain, and tenderness associated with neurofibromas, using both open-label and double-blind protocols, indicate that ketotifen offers a realistic approach to treating these symptoms.

It takes two to tango: mast cell and Schwann cell interactions in neurofibromas

Other articles:

* Wound Healing, inflammation and blood vessel growth
Wound healing requires new blood vessel growth and tissue inflammation. Mast cells are critical mediators of inflammation in wound healing, and they must be quelled and regulated in order to facilitate this healing. Mast cells are also important players in NF1 tumor growth. In the past few years, researchers have gained deep knowledge on how mast cells promote tumor growth, and this research has led to ongoing clinical trials to block this signaling. The result is that tumors grow slower. As researchers learn more about blocking mast cell signals in NF, this research could be translated to the management of mast cells in wounds and wound healing.--NF Network

"Mast cell stabilizers have an affect on inflammation and block calcium channels which ultimately prevents histamine release. (You'll note that some people are using that verapamil cream which also blocks calcium channels.) ...
Flash forward 20 years and Dr. Yang discovers that mast cells may actually represent a potential target for inhibition of neurofibromas. He figures out the pathways and details and basically fills in the blanks. Turns out Riccardi was on to something. He had one piece of the puzzle if you will."--Gleevec discussion

Discussion of mast cell stabilizers in Aspirin therapy discussion

D-Hist is an over-the-counter supplement that works to stabilize mast cells. It also includes N-acetyl-cysteine which is often used for NF.

Keywords: mast cells nf1, mast cells neurofibromatosis, ketotifen nf1, ketotifen neurofibromatosis, histamine neurofibromatosis

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