Sunday, June 26, 2005

A Letter to the Oprah Winfrey Show...

Last year, I was contacted by a member of Oprah's staff for possible participarion in a show where you get to fulfill a dream. My dream at the time I'd written Oprah (I think I's written the letter to her show a year prior to being contacted) was to meet Barry Manilow. However, the idea of being able to bring attention to herpes on Oprah's show became more important to me than meeting Barry Manilow.

Read the letter below and you will see what I mean.

Note: The below letter (Which can also be found on on Angela's Awareness and Advocacy page) was written back in September of 2004.

Letter to the Oprah Winfrey Show

Dear Oprah Winfrey and Staff,

Thank you for taking the time to contact me. It was neat simply to have my letter acknowledged.

I'm going to assume that your reply e-mail means that whatever you have planned in regards to a show with Barry Manilow - I'll be watching on TV and not in person. If you would be so kind as to let me know when you think the show will be on air so I might catch it - that would be great.

To be honest, if I could have a choice between meeting Barry Manilow and asking that you consider doing a show about Herpes Simplex Virus - I would choose doing a show about herpes.

Please let me add that, if you really had me in mind to meet Barry Manilow please don't change your mind. :) I would appreciate it very much though if you would take a few minutes out of your busy day to read this e-mail.

There are millions of people who need to be educated about what Herpes is and is not. Oprah's show has such a wide reach around the world. Oprah could help educate millions of people with one show. I said to you before that if my only regret is that I didn't sing with Barry Manilow then my life hasn't been that bad. If you called me right now and told me I had a choice between meeting Barry and Oprah doing a show on Herpes - I would choose the show on Herpes without a second thought - no hesitation whatsoever.

If you would please take a moment to read further, I promise I will delete your e-mail address and not bother you further.

It is said that one in four people have Herpes. Nationally, I believe the figure currently stands at 45 million people who have HSV2 (genital herpes - 90% of the population has oral herpes which can be transmitted to the genital region). Of those people only ten percent actually know that they have Herpes. The reason for this is that the symptoms of Herpes can be mistaken for things such as jock itch, insect bites, a rash, etc. There is also asymptomatic shedding - where the virus is present - but there is no visible outbreak.

What is scary about the numbers here of people who are diagnosed and know they have Herpes versus those who are not diagnosed and are positive for Herpes is that BOTH groups are at a much higher risk for contracting AIDS than a person who does not have Herpes.

Herpes is more common in women than in men as it is more likely for a man to transmit it to a woman than vice versa.

Women who are pregnant and have herpes can transmit Neonatal Herpes to their newborn child if precautions are not taken. While Neonatal Herpes is rare, babies who contract it may suffer serious neurological damage, mental retardation or death.

Millions of people live in shame and fear about having Herpes. They are afraid others will find out. They are afraid of being ridiculed. They are afraid of being discriminated against. Herpes is used as a punch line for jokes, examples being Joy Behar on 'The View' going off on a man who placed a personal ad who was responsible and advised in the ad that he has Herpes. Jimmy Kimmel, who on his show has made many disparaging remarks about Herpes - one of which I remember was something like, "My Uncle Frank has been Herpes free since 1962", and even as recently as the 2004 Teen Choice Awards, where once again, Herpes was used as a punch line.

There is much to my story (which in the end isn't as important as my desire to bring more public attention to Herpes) but the most important thing is that I choose to be open about having Herpes and to educate others about what Herpes is and is not. Why? First and foremost, my basic personality is that I am quite open, honest, and feel that living with regret would be time wasted where I could be doing something else. I didn't want to wallow in pity. I have Herpes. That's not going to change. Why not take this and make it a more positive experience? Why not help others?

I wish I did not have Herpes, but of all the things in my life I regret or wish I could somehow change, having Herpes does not make the list. Having herpes does not make me any less the beautiful, kind, wonderful, intelligent woman that I am. I'm not tooting my horn here - I'm just stating facts - *smile* - Not to mention that I have met the wonderful, kind, considerate people who are part of the "H" community. I am talking about a diverse group of people whom I might never have met in my normal, daily activities had it not been for having herpes and meeting them in support and social groups.

Having herpes *has* opened me up to ignorance and discrimination. In the state of Michigan, it is legal to tape an in-person conversation that you are a participant of. I state this because last Monday, I went back to my former therapy clinic (I'm receiving treatment for a back injury I sustained in a car accident) and got my therapist on tape telling me that herpes is transmitted in the water (IT'S NOT TRANSMITTED THIS WAY). She said other things prior to this (regarding herpes) which caused me to quit their practice as a patient, file a HIPAA complaint (a BIOHAZARD sign was placed on the curtain of the area in which I was in within full view of the lobby), and go back days later to get the conversation on tape. I did attempt to resolve what happened within the practice before covertly taping the conversation. I wanted proof that I had a genuine complaint and was not disgruntled simply because I was not allowed to have treatment that day in the whirlpool (which is what the doctor implied to me in his return e-mail).

As you will see, the doctor's return e-mail mentions MIOSHA regulations. Interestingly enough, while he is making reference to blood borne pathogens and OSHA guidelines in reference to the biohazard sign being put up, I've since spoken with Sherry Scott, Industrial Hygienist at MIOSHA, and Kris Judd, Administrative Program Manager for the STD program for the State of Michigan. Sherry said that this was a definite violation of HIPAA and has referred me to state law on blood borne infectious diseases (which I am reading now - ten pages of legal definitions, small print and the whatnot. Sherry also said that, based on the situation I described, there was no risk exposure to the employees. What MIOSHA does is look at the work practices in which the employees implement to make sure there was an appropriate barrier controls/protection against them and a infectious agent (this being possible exposure to an outbreak). Sherry said, if the therapist did wear gloves and the gloves were properly disposed of when they were done, that is all that would have been necessary in the blood borne pathogen standard.

Kris Judd also agreed, given the situation I described, even if the doctor denied that his therapist said that Herpes can be transmitted in the water, that the practice was out of line by putting up a BIOHAZARD sign up in the patient area in which I was waiting.

I have no issue with anyone knowing that I have herpes - if I AM THE ONE TO TELL THEM - as I believe education is the best way to disseminate the stigma surrounding herpes. What I don’t appreciate is being placed in a room with a biohazard sign, people possibly seeing me walking out and associating me with the biohazard sign without having any clue of what the circumstances for the sign are.

There is so much more I could say but I suspect, if this e-mail draws your interest in possibly doing a show on herpes, you may want to do your own research.

You may want to start off by contacting Dr. Richard Whitley, Professor Richard J. Whitley, Loeb Eminent Scholar Chair, Pediatrics and Professor of Pediatrics, Microbiology & Medicine at the University of Alabama at Birmingham, a top international specialist in herpes. Richard J. Whitley, MD is the Chairman and on the Board of Trustees for American Herpes Foundation. (From the site: AHF is a nonprofit organization dedicated to improving the management of herpes virus infections. Our mission is to enhance the awareness, understanding, and control of herpes virus infections in the United States by disseminating information and ensuring the exchange of ideas. The AHF is directed by a board of trustees, chaired by Dr. Richard J. Whitley of the University of Alabama at Birmingham, and composed of nationally recognized experts in herpes virus infections).

Another person you might consider having as a guest, should you do a show on Herpes is Terri Warren, RN, ANP, who answers questions (and more) on Web MD's web site and at the following link will lead you to a biography on Terri Warren, RN, ANP which is located on Web MD's web site

Finally, a great resource for information is Angela S. who runs the website (Beautiful to Me) located at: Angela's site is all about help with Herpes Simplex Virus and other Sexually Transmitted Diseases.

Once again, thank you for even considering me - that I might be able to have a chance to sing with Barry Manilow. I *do* wish that I had done things differently back then - that I had left Stuart in the audience and gone on stage. That's my only regret. Still, as I said before, wonderful things have happened in my life because of what happened back then - so in the end - I guess - I wouldn't change a single thing there either.

Best wishes to you.


Blogger HSV said...

Hello Moxie, I am forever bewildered at how many people simply disregard all the sexuually transmitted diseases about STD's. If one recollects about how long the warnings regarding general STD's have been around, and how fast they are spreading, particularly in the africa, and that is not even not even mentioning picture of genital herpes on woman, then the value of sites like A Letter to the Oprah Winfrey Show... become obvious. The proliferation of STD's such as picture of genital herpes on woman must be stopped. Just my two cents worth. Keep up the excellent work I enjoyed your site and will visit it again soon.

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