Growing up we observe certain behaviors and expectations within our family and society that influence how we conclude things ought to be, but with a rare disease like MPS 1, if you make it to adulthood, there becomes a struggle between expectation and reality.
As a man, I grew up with the drive to be a provider, with what some would call a conservative perspective of "manly" expectations. Along my path to adulthood I had to face some pretty uncommon experiences that forced me to deal with everyday topics.
Last Updated June 2016
- Traditional gender roles in marriage
- Mother Denies My Right to Marry Her Daughter
- Should Rare Disease Patients Have Children
- Enzyme Replacement Therapy
- Walking In The Valley Of The Shadow Of Death
- Hyperbaric Wars - A Shattered Hope
What other topics do you think I should talk about? Share your thoughts in the comments below.
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