Sunday, September 25, 2011

Heroes

Ryan White (credit)
Ryan White was a poster child for the HIV/AIDS epidemic in the 80s. Ryan, a hemophiliac, became infected with HIV after receiving a contaminated blood transfusion; he was officially diagnosed with HIV in 1984, when he was in his early teens.

Ryan, who was thrust into the spotlight after a very public court battle over his expulsion from school because of his illness, openly discussed the trials and tribulations of his disease. Ryan fought to increase public awareness of the disease and emphasized the great need for research for the growing AIDS epidemic.

In 1989, the movie The Ryan White Story was aired. As a child of the 80s myself, I can clearly remember the impact the movie had on me. I was blown away by the bravery of this young soul, wise beyond his years.

Ryan's story exposed an ugly side of medicine, calling attention to a disease which was being largely ignored by the medical community because it was steeped in ugly politics. Amid bullying and death threats, Ryan White bravely fought to change public perception of HIV/AIDS, a disease that had previously been thought to only affect the gay community.

On several occasions, I have heard certain aspects of the early HIV/AIDS controversy compared with the chronic Lyme disease controversy. Just like with HIV/AIDS, the medical community has closed its eyes on chronic Lyme disease; insurance companies are denying coverage for treatment; doctors are losing their licenses for treating; patients are dying from not being able to get properly diagnosed and treated.

Ryan White was an innocent child caught in the middle of the HIV/AIDS controversy; my friend Juliana King is an innocent woman caught in the middle of the grossly mishandled Lyme disease epidemic. Like Ryan, despite the controversy surrounding her illness, Juliana's passion and spirit inspire all who know her. Her bravery in the face of sickness never ceases to amaze all who learn of her brave battle with Lyme disease.

Just like I was blown away by The Ryan White Story, Juliana's own story is amazing. She has endured more than most of us can imagine (including recently overcoming an excruciatingly painful collapsed lung after having surgery) and she is still smiling!

Lyme disease recently caused Juliana's long, blonde hair hair to start falling out in clumps, so she bravely shaved the rest of it off. Despite seemingly insurmountable obstacles, Juliana always has something positive to say, and her indomitable will and unwavering hope has turned her into one of the Lyme disease community's biggest and most loved heroes.

Ryan White played a pivotal role in changing the way the world looked at the AIDS controversy. My friend Juliana is changing everything you thought you knew about Lyme disease. Ryan and Juliana are heroes. They didn't ask to be sick, but they moved/move mountains anyway. We can learn a lot from these two!

 To learn more about Juliana's story and how you can help:
Hope for Juliana
Juliana's Facebook Support Page

Juliana and her son in better times






















To learn more about Lyme disease:
Columbia University Tick-Borne Research Center
 Basic information about Lyme disease

To learn more about Ryan White:
HRSA HIV/AIDS Programs

2 comments:

  1. Love you, Alyson. Thank you for writing this. You know who else is a hero? People who write about heroes. They are the silent ones. Hope you are having a "good" day. Love you!!! XOXOX

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  2. What a wonderful post. Juliana is amazing, as are you! You are both heroes to me! Thank you for all you do, my friend. XO

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