Subscribe to our newsletter and receive information on events, recent blog posts, etc.
* indicates required

Little did I know that the symptoms and perceived allergies that I struggled with for years were actually part of a larger illness that would be diagnosed as Systemic Mastocytosis.   This first major episode was diagnosed as vertigo and treated with the appropriate medication.  My health began to decline quite rapidly from this point on.  

Leading up to this episode, I had felt unwell for months and keep saying to myself that I really needed to take some time off work.  I kept saying this over and over and did not listen to myself which is perhaps why, at this point in my life, the illness manifested itself in such a profound way.  Upon returning to Canada, the severity of my symptoms grew to the point where I had to be treated in emergency at least once week for many months and so began the challenge to find out what was wrong.

The disease of Mastocytosis presents in many and varied ways and it is extremely difficult to diagnosis. That is exactly what happened to me.  In reviewing all of the symptom of the disease I would experience most, if not all of them, prior to my diagnosis.  It was overwhelming and troubling to my primary physician and so, on the recommendation of the emergency medical team, I began to see just about every specialist to try to get to the bottom of the difficulties I was experiencing. It was even suggested that I get psychiatric care to ensure that what I was experiencing was not psycho-sematic.

Unable to fulfill my responsibilities at work, I left my position temporarily (or at least I thought it was going to be a temporary leave).  Most of my time was spent at home resting and doing everything I could control to prevent any flare-ups of symptoms. My social life became very narrow and the fear of having another attack prevented me from wanting to go anywhere that I didn’t feel was safe and close to medical help. 

After seven months of having numerous tests, procedures, x-rays and doctors’ visits, a tryptase blood test came back double what it should be.  There began the beginning of a firm diagnosis of Systemic Mastocytosis.  I was immediately referred to an internal medicine specialist and then a hematologist for a bone marrow biopsy. Together they were able to piece together the diagnosis.  A medication protocol was established and with a few adjustments over the next few months I began to feel better. 

I ask myself, after six years of living with Systemic Mastocytosis, what lesson have I learned.  One of best lesson is to listen to yourself and get to know what your body is telling you.  If you feel you need to rest, do so!!  If you feel you are stressed be aware and try your very best to avoid negative, stressful environments. 

The most profound words I can offer those of you seeking answers is to persevere and be your own advocate.  Keep going and you will find the answer, it may take time, but don’t let anyone stop you trying to find that place of better health and well- being.

After six years of treatment, rest, light exercise, better diet and a stress free life, I am back at work and enjoying my job that fills me with passion and is a wonderful challenge.  I am symptomatic every day but my medication and the changes to my life style allow me to do just about everything that I want to do!!