My son Gage, was born with a rare disease called Diffuse Cutaneous Mastocytosis (DCM), an even rarer form of a rare disease called Mastocytosis.
Mastocytosis is defined as an abnormal accumulation of tissue mast cells within one or more organ systems. Gage’s DCM is considered cutaneous (meaning it is only in his skin) and not systemic (not throughout his whole body). The mast cells in his body, release histamine in response to allergens and other environmental stimuli. Because of the abnormal accumulation of these cells, when the histamine is released, it releases far more than his body needs. This can cause many symptoms like itching, redness, hiving, skin pain, bone pain, stomach pain, and puts him at risk for anaphylaxis.
His skin is thickened, red, spotty, and raised with a texture much like an orange peel. It is prone to hiving and blistering; and, the blisters can vary in size, from barely visible, to bigger than a half-dollar, and just as one or in larger clusters. The blisters spare no part of his body. He is currently being treated with antihistamines like Zyrtec and Zantac, but it is hard to keep the blistering under control as well as the many other symptoms that he has.
It is still unknown if he has systemic DCM for sure or not, as there is no way to tell right now if he can ever “outgrow” it. In the meantime, we are trying to have a normal babyhood and childhood while managing this disease.
Global awareness is our dream, and we are so thankful that we can do this for him through this organization.