You know a lot about breast cancer, but what do you know about cervical cancer?
You know a lot about breast cancer, but what do you know about cervical cancer? Everyone knows about the “one less” ads promoting the Gardasil vaccine, but what do they really know about Human Papamillovirus?
HPV is the most common sexually transmitted infection. You can get it from skin-to-skin contact, even if you have protection.
Men can carry the disease but there is no test for them. Most people don’t even show any symptoms of the disease.
A new campaign called Tune In HPV has risen around this issue and has provided a safe space for people to share stories. Our Web site, www.tuneinhpv.com, provides a place to share your story about HPV. It doesn’t matter whether you had the disease, knew someone who had it, or wanted to share something distantly related. We are open to anything that promotes HPV awareness.
We plan on making videos from the submitted stories and posting them on the Web site as well. These videos are short, off beat, humorous at times, and always informational. We hope that visitors will gain knowledge while being entertained by watching our videos. We are not in any way trying to give our medical advice to people, please seek your doctor for that. We are simply here to provide a place for people’s stories.
Our information is supported by the Washington D.C. Department of Health and the Center for Disease Control. Tune in HPV is a grass roots campaign built through the School of Communication at American University by a Communication and Social Change course.
We want to encourage you to “tune in” to the knowledge within you and to protect yourself from HPV. We want to hear what you know, what you’ve experienced, and we want to make you laugh and think.
Be sure and let Giovanna Chesler, our executive producer, know what you think of tuneinhpv.com at chesler@american.edu
Another place to share your HPV story
Filed under Uncategorized | Comment (0)My HSV-1 Eye Herpes
I found out my childhood cold sore virus had moved to my eye after a couple of misdiagnoses in 2003 – I was 29 at the time. Extreme light sensitivity, etc. in the high altitude dessert turned my life completely around. With all windows blacked out, I slept during the day and worked from home at night with an eye patch over my affected eye, which made detailed computer work pretty difficult. Other symptoms included, redness, pain, scratchiness, itchiness, blurred vision, runny eyes, general run down feeling, horrible anxiety and depression and as it progressed - I eventually got several flu like symptoms too (in bed for days at a time, fever, congestion, etc.).
After several urgent care visits, I was finally diagnosed with eye herpes a month later by the hospital’s ophthamologist, he prescribed me viroptic and pred eye drops. I finally recovered after a couple months, but then I broke out again to the worst pain I’ve ever experienced. I cut my hair hoping that would stop the most severe headaches of my life. Doctor’s dismissed the feelings I had “in my head,” but eventually after a couple more doctors I got on oral anti-virals too (anti-virals have made an incredible difference!). It took many months to recover from that second outbreak, as I tried going off the drops and oral anti-virals, but I broke out again, and again. Finally we found some very knowledgeable and experienced doctors that got me off drops and on suppression therapy at UCLA’s Doris Stein’s Cornea Division. They have treated me like gold and I’ve gone there ever since.
Almost two years ago I moved a few hours outside of Chicago and I had only had a couple minor flare ups. We called my doctor in Cali and he said to take up to 2000mg of acyclovir if and when the virus acts up, and if it doesn’t clear right up to find a local ophthamologist. I had done very well up until very recently and I had a minor outbreak. Through a series of referrals I found another herpes specialist ophthamologist at the University of Illinois, Chicago. He confirmed my outbreak, switched me to Valtrex and I have another appointment with him in a couple weeks. I am grateful that when there is viral activity present, I now have control over it - I have become aware of what my body needs (usually an increase in anti-virals and a few days of rest/limited sun exposure), and I do well mostly on my own anymore.
I hadn’t done much of my own personal research since I first found out about my disease. I did a little online research, but mainly began therapy to get a better handle on my stress/anger issues. I was pretty frustrated there was limited information about ocular herpes, and with my first year of nothing but poor doctor advice, I didn’t want to further mislead myself with all the “miracle herpes cures” and whatnot out there. I recently did a great deal of research, though, and was pleased to find a little more info available, but I definitely had to dig past all the bogus hooey. Some of which I found was posts on herpes boards from frightened individuals – claims about brain herpes being a HUGE killer that we should all be afraid of it – that frightened me away from learning more about the very rare, extreme cases of my disease. I’ve since studied up on HSV-1 a great deal and I feel more confident that my life will go on even if I lose more vision and/or the virus keeps spreading. Actually when I read that many encephalitis (brain herpes) cases go undetected, because it is so difficult to detect, I wonder if I didn’t already have it when the headaches were so intense. All the other symptoms were there, and I was desperate enough to cut my long hair that I’d been growing out for over 10 years. I have lossed vision and at least two straight years of my life, living in a cave - herpes is not something to be taken lightly, but it’s also not something to be scared and run away from either. It is what it is, a pain in the…;) I think the best thing to do is find the best care for your body and don’t give up no matter what.
I find that generally people are scared to talk about herpes - but the majority of us have one type or another. People don’t know the dangers because they’re scared to get past the stigma or whatever; well I’ve been doing a lot of talking… Some of my family and friends seem scared of me right now for their own personal reasons, but that’s ok, my eye herpes brought about big changes, and that takes time to adapt to for people that don’t understand. (And, well, there are times when I don’t relate to them either…;) Because it’s difficult to go it alone and there aren’t always perfect support groups out there for rarer individual viral strains of herpes – I learned to seek out whatever support that’s available. I now have the best friends a gal could ever ask for and I’m always looking for more. I am so very grateful for those that have really been there for me. I look forward to being there for them too, ’cause I know I’m going to be just fine and it feels so wonderful to help those that have helped you. This is such a wonderfully informative site. Thank you Angela for your amazing contribution – I sure hope many others follow this shining example of getting the word out.
Much love and support,
Heather
Filed under Uncategorized | Comment (0)The One4One Campaign
ASHA is one of many organizations participating in the One4One campaign, a unique program focused on empowering women to help make a difference in the fight against cervical cancer.
The campaign urges women to talk to their healthcare provider about ways they can help protect themselves from cervical cancer, while also raising money to increase cervical cancer information programs and other educational services.
For each woman who pledges to talk to her healthcare provider about cervical cancer via www.One4OnePledge.org between April 24 and June 5, Merck will donate $5, up to $1 million total, to the participating One4One organizations.
The funds raised will be used to provide cervical cancer information programs and other educational services for women across the United States, including women at greater risk of developing the disease due to lack of access to information or healthcare.
Let’s Talk about HPV and Cervical Cancer
Filed under Uncategorized | Comment (0)Constructive Feedback
There are many times I get feedback from folks that I feel is powerful enough to want to share it with the rest of you! Before I share though I always write to the person that sent their e-mail to make sure it’s ok with them first. I don’t ever post anything unless I have permission to from the author OR unless I can find it on a public message board. Anyway, thought ya’ll would find this to be of interest…
Hi Angela,
I came across your Yoshi2me web site today while doing some internet searches for information on herpes. I am a 24-year-old woman, and just last week I tested positive for HSV-2 while experiencing my first outbreak. Since then I have been going through a roller coaster of thoughts and feelings. One day I feel fine about it and the next day I find myself freaking out! Half my brain is trying to be rational and say, hey, it isn’t cancer or anything, but the other half of my brain just wants to cry and cry.
It was really rewarding for me to read the very personal accounts on your web site and recognize the success of so many people in leading happy lives in spite of this virus. Your site helped me to realize that this diagnosis is not the end of the world, or the end of my romantic life, or anything more than one of life’s little challenges. I really appreciate you having the courage and frankness to open up to others about your experience and create a place like Yoshi2me where people can come together and support one another.
I am fairly certain that I contracted the disease from my boyfriend of five years, who left me several months ago. When he left, I learned that he had been having an extended affair with a married woman and had probably been unfaithful in the past as well. All that infidelity combined with our unprotected sex (since I thought it was a long-term monogamous relationship headed towards marriage!) would have provided easy circumstances for transmission. I was already suffering from issues of betrayed trust at the end of this relationship, and learning about my herpes diagnosis made it even worse.
However, I am very fortunate to now be in love with a much better person. We had only been together for a few weeks when I learned about my positive diagnosis. We were already very close and very committed even after such a short time, but I was terrified that this news would scare him off entirely. On the contrary, though, he is very supportive and says that this diagnosis has no impact on how he feels about me. He told me, “I love you and I intend to spend the rest of my life with you. I don’t ever intend to have sex with anyone else. So frankly I don’t care if you and/or we have herpes. We’ll have it, and we’ll deal with it, and it won’t be the end of the world. It won’t ever change how much I love you.”
Having that kind of support has really helped me through these first couple of weeks. Finding web sites like Yoshi2me provides an indescribable amount of help as well!!
Anyway, I apologize for this email’s length and personal content, but I really wanted to thank you for creating a site that helps herpes patients feel like normal, beautiful, and worthwhile people instead of lepers and outcasts. Thank you, thank you, thank you.
~ Erin
Note from Angela:
Thanks so much Erin for sharing your story with me and for allowing me to share it with others. I know there is probably one person out there who feels they are alone. They are going to read your story and hopefully realize that there is some light at the end of the dark tunnel they have found themselves in.
Read more inspirational stories
Filed under Uncategorized | Comment (0)Genital Herpes Clinical Research Study
Do you have genital herpes? A clinical research study is being conducted to evaluate an investigational medication for genital herpes. To qualify you must:
Be at least 18 years of age (if you live in Alabama, you must
be at least 19)
Be diagnosed with genital herpes
Have had at least 4 outbreaks in the past year
All study-related examinations, lab tests, and the study medication are provided to qualified participants at no cost. Qualified participants will also receive compensation for time and travel. For more information, please call 1-800-438-5260 or visit www.ashastd.org/trial.cfm.
Talk about other Clinical Trials going on
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