As
I mentioned in my discussion board post this week my first thought on including
children in research studies would be No!
After reading all the rules and regulations that are in place to protect
children and learning about the benefits my thoughts turned around. The more I thought about the situation it
reminded of a child that I know personally who has participated in research
studies for a condition that he has that he was diagnosed with at a very young
age. The child appeared to be a normal 5
year old who played with other children, however, he didn’t do a lot of running
and climbing as did his peers. His
parents went to many appointments until he was diagnosed with a condition known
as Friedreich's ataxia. Friedreich’s
Ataxia is a rare inherited disease that causes nervous system damage and
movement problems. It generally begins
in childhood and causes impaired muscle coordination, degeneration of the spinal
cord and peripheral nerves and the part of the brain that coordinates movement degenerates
(National Institute of Neurological Disorders and Stroke, 2014). Unfortunately, at this time there is no cure
for this degenerative disease of the nervous system (National Institute of
Neurological Disorders and Stroke, 2014).
This family has elected to have their child participate in research
studies over the years. When I last
talked with them they were satisfied with the results that they have gained
from the studies that they have participated in. The family and their son find it rewarding to
be a part of working to find a cure for Friedreichs’s Ataxia.
Reference:
National
Institute of Neurological Disorders and Stroke. (2014). Friedreich's Ataxia Fact Sheet. Retrieved from http://www.ninds.nih.gov/disorders/friedreichs_ataxia/detail_friedreichs_
ataxia.htm#260083070
Hello Randee,
ReplyDeleteThank you for your post. I had never heard of Friedreich’s Ataxia before. It is so sad when children suffer from any type of disorder, but a degenerative condition is even worse. It is good that it was noticed when he did not play as hard as the other children. I hope they are able to find a cure for him. I guess when you think about it, every thing we take or do now medically was experimental at first. Thanks for sharing,
Bonnie
Hello Randee,
ReplyDeleteYour post was very informative. I have to agree with bonniesbaker it is sad when children have that type of disorder but degenerative condition is way worse. I hope that a cure is able to be found but I strongly think that a cure could already be in affect but everyone knows that medical is money maker. So its more easier to "treat" an issue than to cure, cause once the issue is fixed the money STOPS.