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Systemic mast cell disease and or multiple angiolipoma

Systemic mast cell disease and or multiple angiolipoma

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Posted by Brian Maskell on December 30, 1999 at 23:30:54:

1. Mast cells degranulate progressively during day, the rate becoming exponential towards midle of the night. Produces small (painful) lumps, pain, and other symptoms including flushing, bunrning sensations on skin, generalised hyper-neurosensitivity, broncho-spasms, pleurisy, arrythmias, generalized muscle twitching, skin lesions on face and scalp (that have advanced to squamous cell carcinoma) and anaphylactic shock during advanced acute attacks. Symptoms progressivly worsened over 18 years. Seems to be a correlation between daily level of physical activity and (particlarly nocturnal) level of mast cell degranulation.
2. Mast cell problem seems to have caused development of multiple angiolipomata in progressively-increasing numbers (presently c.200 including 7 in lungs) over the same 18 year period: many are painful or become painful towards end of day; the number of painful angiolipoma appear to be linked to the daily progressive degree of systemic mast cell degranulation.
3. Individually, and (even more so) collectively, these disorders are so rare that there seems to be no trace of others having them.
4. Unable to get useful medical assistance in New Zealand. Prepared to travel to a leading research centre or hospital in USA or Europe but I have a preference for establishments that can contribute leading-edge specialists in biochemistry/human pharmacology. Access to oxygen and also hospital back-up in case of acute attacks would be necessary.
5. High research value is anticipated because the daily cycle of this disorder provides fast feedback on interventions.
6. Present preference is for NIH Bethesda or similar establishment. Funds available are limited.
7. Problem is progressively causing performance of legs to deteriorate but can still undertake journies required at time of writing (31 December 1999).

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