Q. Is mastocytosis contagious?
A. No. However, patients should not donate blood or any organs.
Q. Why are patients advised against donating blood or organs?
A. Medical research has not determined conclusively that is safe to do so. Until they know for sure, some physicians have advised patients against donating blood or organs.
Q. Are these inherited disorders?
A. There are some familial cases of mastocytosis and related mast cell disorders. More commonly, within a family, members may have different disorders which are all impacted or worsened by irregular mast cell activity. Research has found a genetic component to mastocytosis in some patients (not all) but has not determined definitively how these disorders are initiated. It is expected that with genetic research, more genetic markers may be identified.
Q. Does a mastocytosis or mast cell disorder diagnosis mean I will suffer all the known symptoms?
A. Not necessarily. These disorders are so variable in presentation and activity per patient, it is difficult to predict what an individual patient will experience.
Q. If diagnosed with a cutaneous form of mastocytosis, does that mean it will not progress to systemic mastocytosis?
A. Hopefully. However, there are many patients who have both cutaneous and systemic forms of mastocytosis.
Q. Do pediatric forms of mastocytosis resolve during puberty?
A. To date, medical research indicates yes for an estimated 50% of pediatric cases. However, there are some adults with mastocytosis who also had the disorder in their childhood.
Q. Is Mastocytosis considered to be a form of cancer? Or is the risk of developing cancer greater with mastocytosis and other mast cell disorders?
A. Cutaneous and Indolent forms of mastocytosis, and mast cell activation disorders, are not cancer. Some aggressive forms of mastocytosis and mast cell leukemia do involve types of cancer. In most cases, mastocytosis does not equal cancer.
However, this is a neoplastic disorder which refers to the abnormal proliferation of cells. Cancer is also classified as neoplastic. The difference is that cancer cells are malignant. Mast cells are actually good immune system cells but in the case of mastocytosis and other mast cell disorders, the mast cells may be elevated in numbers and/or behaving abnormally.
Q. Does systemic involvement mean death is imminent?
A. Mostly, no. For cutaneous and indolent forms of mastocytosis, patients should have a normal life expectancy. However, those who experience anaphylaxis and other life threatening symptoms or complications, and those who have tested positively for bone marrow involvement, are at greatest risk.
Q. Is there a chance that my mastocytosis/mast cell disorder will go into remission?
A. Childhood forms of mastocytosis often will go into remission as the child ages but in most cases the adult form does not.
Q. Is it necessary for me to carry an epipen?
A. If the patient is prone to anaphylaxis and/or preliminary signs of anaphylaxis such as sudden breathing difficulties, lip/throat swelling, hives, wheezing/heaviness in chest, and or sudden drops in blood pressure, it is suggested that they are prepared at all times just in case a severe reaction were to occur. Always telephone 911 Emergency to be safe.
Q. Should I wear a
A. Yes. We suggest all patients register with MedicAlert and keep their medical data updated regularly with MedicAlert. It will speak for you when you are unable to do so yourself. It also ensures physicians and paramedics know your medication and health history, as well as any sensitivities you have.
has a subsidized Membership Assistance Program for patients with limited financial means.
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