According to an article entitled, “The
Hazards of Growing up Painlessly” by Justin Heckertnov which appeared in the
New York Times, he described three main cases of people around the world living
with Congenital Insensitivity to Pain with Anhidrosis or otherwise named
Hereditary Sensory Autonomic Neuropathy. These three cases, each with very
unique personalities and characteristics, will be further elaborated below for
your perusal.
Ashlyn Blocker, was at the time of
the writing of the magazine article twelve-years old, now sixteen has become
somewhat of a curious spectacle and a celebrity in her hometown at Patterson,
Georgia in the United States of America (Heckert, 2016). Some instances of her
childhood were recounted in the article. Indeed, raising a child who cannot
feel pain nor sweat proved to be challenging for her own parents. The instances
discussed will show you how. Once, she was stirring ramen noodles in the family
home’s kitchen when suddenly the spoon slipped from her grasp and fell into the
boiling water. To the horror of her mother, Ashlyn retrieved the spoon from the
boiling water using her hand. She ran cold water over her scarred hand and then
summoned her mother, Tara, who rushed to apply pressure with ice against her
daughter’s hand. Her mother had to show her how to retrieve the spoon next time
by using another kitchen utensil instead of her own bare hands (Heckert, 2016).
Such is a challenge that for Tara Blocker, raising a child who has no means of
pain sensations to warn her of an imminent danger proved to be hazardous.
In another instance, the family gathered
around for a casual fun of activities such as drawing on napkins, playing
checkers, and singing when Tara noticed Ashlyn playing with her headband. Tara
went to her daughter to remove Ashlyn’s hair away from her ears as her skin was
bleeding underneath her hair. The headband was slicing into her skin all this
while and Ashlyn did not feel the pain (Heckert, 2016). Such an unfortunate
incident requires parents to constantly supervise their child.
As Ashlyn got older, her dad
recounted an amusing story from a man whom her father met while working. The
man asked her father what would happen if Ashlyn got her hand amputated. Would
she not feel any pain? Her father replied that Ashlyn will certainly feel no
pain. The man looked stunned and wondered how such a thing could be real! Ashlyn
laughed when her father recounted the story as she found it amusing that
someone would ask her to amputate her hand (Heckert, 2016). People around her
are often curious about her condition. Yet, her condition does not deter her
from making friends with her peers in high school.
The second person featured in the
article is an unnamed boy. His case is a sad one. Dr. Geoffrey Woods, a
researcher who conducts research to find out more about this rare disease, was
asked to see a boy who lived in Lahore, Pakistan (Heckert, 2016). The boy
was said to not be able to feel any pain, hence, also suffering from the same disease
as Ashlyn Blocker. Dr. Woods agreed to see the boy. When he arrived in Lahore,
however, his parents recounted to him that the boy was no longer alive. Dr.
Woods gave the account that on the boy had wanted to impress his friends on his
eleventh birthday. The boy decided that he would leap off the one-story roof of
his house. He was able to get up and brush the dust off his clothes, saying
that he was well. However, unfortunately he passed away the next day due to
internal bleeding. He did not feel any pain after leaping from the roof of his
house. Pain which served to warn us, did not warn the boy. Pain was supposed to
have held him back from doing such risky activities, but he did not feel pain.
Parents could also be accused of harming their kids when kids suffer
self-induced injuries. Hence, it is never easy to raise such a special child
with a special disease (Heckert, 2016).
The final case in this account
involved two sisters: Karen and Ruth Cann. They knew they had this disorder as
they developed from childhood to adulthood, but they weren’t sure if their
smelling senses were functioning normally or were absent. Hence, when they saw
Dr. Woods for consultation, he tested them. Dr. Woods placed items that have
strong smells such as coffee and oranges, but they could not smell the aromas (Heckert, 2016). However, they told him that they were able to taste. Such a paradox
involving the separation of smell and taste sensations is unfathomable to the
rest of us who studied that both smell and taste sensations often relate to
each other. Yet, some people with this disorder could only taste and could not
smell. Similarly, when pregnant women with this disorder are about to deliver
their babies, they could feel the pressure or contractions, but they could not
feel the pain resulting from childbirth.
This post aims to highlight the
cases of people with such a rare disease and provide an clear window which we
can peek into the lives of people living with a rare disease. Precautions and
measures should be taken to ensure that they are able to care for themselves.
Yet, they can still live their lives well, albeit differently. But, aren’t we
all different from one another? So are they.
Reference:
Heckert, J. (2016). Ashlyn Blocker, the Girl Who Feels No Pain. Nytimes.com. Retrieved 13 October 2016, from http://www.nytimes.com/2012/11/18/magazine/ashlyn-blocker-feels-no-pain.html
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