Being newly diagnosed with a mast cell disorder can be overwhelming.  It may be difficult to know how to describe your condition to family and friends.   Here are some key points that might help aide you in those discussions:

  • I am not contagious.
  • I have excess or abnormal mast cells that are overactive.
  • There is no cure but there can be treatment to help control the symptoms.
  • I will have unpredictable symptoms which may include:
    • skin rash
    • nausea
    • diarrhea
    • allergic-type reactions or anaphylaxis
    • flushing
    • fatigue
    • brain-fog
    • changes in my blood pressure
    • shortness of breath
  • I can be triggered by certain medications, chemicals, stress, certain foods, odors/perfumes, heat/cold or friction.
  • I need to have access to:
    • emergency room care
    • restrooms at all time
    • fresh air or climate control
    • medications such as antihistamines, injectable epinephrine
    • bottled water
    • frequent rest periods

If I ask for help or if I am behaving strangely, I may be having an attack which can be life threatening.  I may be conscious, semi-conscious or appear to be fainting.  If this happens:

    • please lay me down
    • call 911
    • ask for paramedics
    • tell the operator that it may be anaphylaxis
    • look for my Epi-pen/Twinjet

I may be able to manage my symptoms, but please do not leave me alone.  I will need immediate access to my medication such as  epi-pens, bottled water and a restroom. Please stay with me until medical help arrives. 

It may take some time, but most patients with mast cell disease can live full and wonderful lives with modifications to life style and the use of  treatments designed by their medical care professionals.  Please remain calm and don't be afraid.  We can manage this together.