Desiree's Contribution to CFS
Awareness
May is Chronic Fatigue Syndrome & Fibromyalgia Awareness Month.
2 weeks ago I was very fortunate to have the energy and
opportunity to speak publicly about my illness and valcyte
treatment that I've been on since June. In Utah we have a state
holiday on July 24th called Pioneer Day. On this holiday we
honor the first Mormon pioneers who came to Utah in 1847
escaping religious persecution. Part of the festivities for this
holiday includes a Days of 47 Pageant for young women. I was
able to participate as a contestant in this pageant. The pageant
is unique as it does not have a swimsuit or talent competition
and the contestants are judged on their community service,
education, goals and speaking skills. Those chosen as royalty
receive nice scholarships.
The judges were given an information sheet on which I included
my struggle with CFS. In the interview portion I was asked
several questions about Chronic Fatigue Syndrome and the Valcyte
treatment I've been on. I explained virus induced CNS
dysfunction and how the drug Valcyte works. One of the judges
got emotional and told me he had a daughter who had CFS and told
me there was hope in getting better as his daughter recovered
and now lives an active life. I got emotional too and started
crying as I told my story, but despite the tears I made it into
the top 10 out of 40 girls. I also was asked questions about my
illness and quest in being a CFS activist on stage. I expressed
the frustrations for myself and many other CFS patients that
have to put up with the trivializing name "Chronic Fatigue
Syndrome", where fatigue is only one of many symptoms of this
complex illness. I also explained that there was a petition
currently going around to change the name of the disease and
encouraged people to get on the bandwagon and sign it. There
were several hundred people in the audience and the judges were
all influential people in the community. I was so glad that I
got to get the word out in my community that CFS is a real and
serious illness. After the pageant all 5 judges pulled me aside
and told me that they were touched by my story and wished me a
successful recovery. A photographer also came up and told me
that he struggled with CFS and in fact didn't know how he was
going to make it through the day taking pictures of all the
contestants, etc. He was glad someone was getting the word out
about the illness.
Initially, I was very nervous about how the judges would respond
to my story of Chronic Fatigue Syndrome. It turned out to be
very positive. Having an accepting audience and having the
opportunity to educate others in my community about this illness
was better than winning! Plus I don't think I'm quite ready for
the energy demanding duties of being in the Days of 47 Royalty.
But who knows what will happen next year, I might just be a
bundle of energy!
Here's a link to Desiree's Blog - It's definitely worth
reading.
click here
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