I am 2 years old and diagnosed with Mastocytosis and mono-clonal mast cell activation disease, they are classified as a myleoproliferative neoplasm disease. I have it in my gi tract, skin, and they believe my lympnodes. Because of this I am triggered too have allergic type reactions including anaphalaxes to multiple things including SUNLIGHT, HEAT, COLD, STRESS, FRICTION, VIRUSES, INFECTIONS, CUTS, SHELLFISH, TREE NUTS, LEMON, STRAWBERRIES, RASPBERRIES, CAROTTS, COCOA, MSG, BENZOAT PERSEVATIVE, AND much much more. They are thinking about doing a feeding tube because I am not growing. I am confined to my home unless I got to the doctors or hospital for the time being. My life is much different then most peoples and it is a fight to keep running everyday. It's a disease of the bone marrow called a MPN disease mylopreliferative neoplasm disease and I was born with it. It is very rare also a…
OH NO SPRING IS COMING
Wednesday, March 27, 2013 12:36 PM
Spring is coming and Jackson is having a hard time with his mastocytosis because of this. :-( We are going back to NIH real soon, I hate seeing him like this and not be able to do anything but give him his medications.