Rare Disease Awareness Day / St Albert Photographer

February 28th is Rare Disease Awareness day.  The are over 7000 rare diseases out there and they share this day.  Today I want to share with you a condition that effects me, Idiopathic Subglottic Stenosis.  Going forward I will refer to it as ISS.

I was diagnosed with ISS about 4 years ago and hind sight being all that it is, I realize my symptoms started a couple years before that. I had surgery about 3 years ago and will most certainly have many more as I am only 44 years old.  ISS is a condition that effects the trachea.  For unknown reasons the trachea grows closed with scar tissue and inflammation.  It doesn’t occur super quick in an attack sort of manner.  It moves slow.  For the most part it doesn’t have a huge impact on my daily life.  Sure, I do become winded with physical exertion, my voice does become hoarse or lost with excessive talking and dry air and I cough more than the average healthy person.  I also think about breathing more than a regular person, which makes sense as I can feel it always.  It’s like breathing through a straw or being slowly strangled from within.

This condition in the idiopathic form effects pretty much only Caucasian women.  Most between the ages of 40 and 60.  I am a participant in 2 medical studies, maybe one day we will find an answer. If you would like to learn more please check out the link above.  You can also feel free to ask me.  I am not shy about it.  Send me and email or ask me about during our portrait session.  I am happy to share.  Whatever you do don’t feel sorry me.  I don’t feel sorry for me.  That are far worse conditions out there to deal with.  I consider myself lucky that I can work, exercise and travel.  I am grateful for all that I have achieved thus far and will achieve in the future.

This is a self portrait I created last year.

 

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