True Life: I Have NF

NF stands for Neurofibromatosis which is a disease that results in the growth of tumors at random points within the body. It can also cause changes in the rate of growth of tissues and bones of the body. This disease has three classes: NF-1, NF-2, and schwannomatosis. Type 1 affects the formation of the bones and spine; sometimes tumors grow in the nervous tissues. Most of the type 1 tumors occur below the skin. With NF-2 the tumors are mainly concentrated on the nerves both cranial and spinal. Schwannomatosis is very rare and much of this type of NF is still unknown. One of the characteristics of schwannomatosis include the development of a certain type of tumor that contains schwannomas.

I decided to watch this episode of True Life because I had never heard of NF before so after google it I thought it would be interesting to learn how people live their life with this disease. During this episode three teens with NF show how they cope with daily life and the process of preparing, and going through a tumor surgery. Surgery is a common part of their daily existance since some of these tumors with grow in the brain, spinal column and other nervous tissue. The teens were Phillip, 16, Amber 19, and Behka, 19; they all have type 1 NF. Since this is a genetic disorder we got to see how Philip and Amber interacted with their NF parents and siblings. But Amber’s NF appeared suddenly as a genetic mutation so she the only person in her family to have the illness. This illness narrative was a Restitution narrative for the teens in the aspect they yes they knew that they would have NF for the rest of their lives but they continue to believe that with tumor removal surgery they will be able to live a normal life. By watching the narrative I understand how the teens felt, I learned more about the issues they face and what kind suffering they have to go through. For those less severe forms of NF the associated stigma is not as significant because not everyone call tell you have to the disease. But for those like Philip and Amber their large visible growths make them stand out and get treated differently. Since each of the teens were pursuing a surgery the audience was able to see how they interacted with the health care providers. The doctors were very comforting and made an effort to explain the reasons for their course of treatment. In my opinion the teens embraced the sick role very much by seeing their doctor with is seemed that things were changing like Amber did because she was having more difficulty walking.

After watching the true life episode I think that creating an illness narrative helped relieve the sufferers. They able to be themselves without worrying what others thought and share what they have to experience. Even for the family the illness narrative can be a great way to almost feel the way the NF family member feels day to day. This is very similar to the ideas of the second lecture when we discuss the benefits and cons to being the listen in this sort of situation.


Source:
http://www.ctf.org/Living-with-NF/what-is-nf.html
http://www.ninds.nih.gov/disorders/neurofibromatosis/neurofibromatosis.htm

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