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Finding Support

Contribute to NCCC's eBook!

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Among the most popular, and important, resources available on the NCCC website are personal stories from individuals about the devastating impact of cervical cancer. From the videos produced at this year’s NCCC conference in Atlanta to the personal experiences shared by hundreds of website visitors, such stories are incredibly powerful. these narratives convey messages of strength and hope and raise awareness about the importance of prevention.

Given the value sharing such personal stories and experiences, NCCC is embarking on a new project?producing an ebook collection of stories from patients, parents, family members, providers and advocates.

Read more...
 

Join ASHA's Online Communities

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ASHA has partnered with Inspire to bring you two online forums for discussion, information, and support.

 

The ASHA STI Support Community and the National Cervical Cancer Coalition Community have hundreds of discussions across many different topics, including testing, treatment, emotional and relationship issues. Recent discussions include:

We would be pleased to have you join us, so we hope to connect with you soon in the ASHA and NCCC Inspire communities!

 

National Women's Health Week Twitter Chat

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The week of May 12-18 is National Women’s Health Week. We’re excited to be supporting a Twitter chat on trichomoniasis as part of the week’s events. Please consider furthering the discussion on women’s health by promoting and participating in this Q&A session on this important health topic.

On Thursday, May 16 at 4:30 PM EST, Dr. Jane Schwebke, Professor of Medicine at the University of Alabama, Birmingham  will answer questions on Twitter about sexual health and STIs, particularly the common but little-known trichomoniasis. Participants can submit questions to @PromiseToMe (www.twitter.com/promisetome) and follow along using the hashtag #ItsTrichy.

 

 

Answering the Calls

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ASHA’s Kathy Lafferty reflects on nearly two decades of educating the public and health professionals alike on HPV

Over many years I have worked on hotline services that deal with sexually transmitted infections (STIs), and have answered countless questions about HPV. I have found it’s important to give callers not just information about the virus but to also address their specific health concerns and clear up common misconceptions. This is the best way to alleviate some of the anxiety callers may feel.

Questions are often as basic as “what is HPV?” to which I respond by asking the caller if he/she is familiar with warts that appear on the hands and feet. I tell them that HPV is a common skin virus that causes warts and other lesions, and that different types of HPV infect different skin on the body, including the genital and anal areas. I believe this comparison gives context to HPV. Then I cover the difference between genital warts and cervical dysplasia (abnormal cells) caused by HPV. Callers diagnosed with cervical cell changes related to the virus are usually anxious because they have read information about the link between cervical cancer and “high risk” types of HPV. I explain that most women with cervical dysplasia due to HPV do not develop cervical cancer, and that regular Pap tests as recommended by their health care provider are very important in detecting any changes due to HPV, and in making decisions about treatment and follow-up.

Many callers with an abnormal Pap test suggestive of HPV wonder why they may be told to come back for another Pap test in six months, rather than being given treatment right away. It’s especially important with these callers to place the risk of cervical cancer in perspective, that mild or even moderate cell changes often clear on their own, cancer is not a common outcome, and a watchful waiting approach is often indicated.

If a woman does need treatment for cervical abnormalities, there is usually anxiety over not knowing or understanding the exact process involved. Almost all of these women have had – or soon will have - a biopsy of the abnormal tissue and a colposcopy, so sometimes they have questions about that. With these callers I try to summarize these procedures and, if they like, discuss some of the most common treatments a healthcare provider may recommend (such as cryotherapy where the affected tissue is destroyed by freezing with liquid nitrogen). We of course will focus on a specific treatment that may be in store for them. By breaking it down and tailoring the information to their particular circumstances, hopefully they’ll not only become better informed but their worries will be lessened, too. Another common question is related to HPV’s latency period, with callers frequently asking how long they may have had the virus. I tell them that this is usually very difficult to determine, as it could be weeks, months, or years before symptoms develop or a diagnosis is made.

Because so few people actually develop visible symptoms, and HPV testing is limited, most people with the virus are not aware, yet HPV can still be transmitted without visible symptoms. It is estimated that half or more of sexually active people have, or have had, a genital HPV infection. Callers often ask about treatment if they have the virus but no symptoms: I tell them that treatment is only recommended if symptoms are detected (warts or cervical cell changes). This can be frustrating, because our nature is to do something, and not be passive!

Callers are also concerned about pregnancy and HPV, so I explain that HPV is a skin virus and not in blood and thus unlikely to infect the baby. I tell them the major concern would be if the mother had genital warts which were blocking the birth canal or bleeding at delivery. In that case, a caesarean delivery might be recommended, and this is something the caller should discuss with her healthcare provider.

We cover most any topic related to HPV you can imagine, but those are some of the more common things we discuss on the hotline. By offering callers the ASHA website and online HPV message board they can get more helpful information and have a source for support after I disconnect with them. I truly believe, though, that contact with a person over the phone via a hotline service like ASHA’s STI Resource Center is especially helpful to the caller. There have been many times I could sense that when we’re through, the caller has a reduced level of anxiety. When a caller states “you have been so helpful, I feel much better” I know I’ve done a good job!

--Kathy Lafferty is ASHA’s longest-tenured health communication specialist. Connect with her and other ASHA staff through the STI Resource Center hotline at 919.361.8488 or online.

 

Pulling Threads from Charlotte’s Web(site): Pamela Wisniewski and Herpes/HPV support in the Queen City

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When she moved to Charlotte, NC in 2005, Pamela Wisniewski was still grappling with the impact of being diagnosed with herpes two years earlier. Finding few resources in her new town, she built a support group that now offers outreach for both herpes and HPV through support meetings, social events, web-based programs, and a message board that reaches thousands of members.

A Ph.D. candidate at the University of Charlotte (and newly married), her work with the Charlotte “H” includes engaging the media to articulate accurate messages about HSV and HPV. The Helper/HPV News sat down recently to talk with the 29-year old activist who’s mantra for success is simple and direct: start locally and put a face to your cause.

In an editorial you wrote for STD Awareness Month in April 2009, you refer to yourself as ‘Charlotte’s poster girl for herpes and HPV.’  How did you become involved in HSV and HPV support?
When I came here there was a herpes support group but it wasn’t active, so I decided to start my own yahoo group.  We started with a few social events, and after six months we realized the need for more of a support component. More recently, we’ve supplemented the social and support aspects of our group with a move toward promoting herpes and HPV awareness within the community.  Four years after finding out about having herpes, I was diagnosed with high-risk HPV. I had a need for support, there was also a need in the community, so I stumbled into all this and Charlotte “H” came to be. The “H” covers either virus…

When the promotion and outreach efforts began, many of our group members were reluctant to take part out of fear that going public would damage their careers and interpersonal relationships. This told us we needed to make a priority of helping members become comfortable with who they are, and to not let a herpes or HPV diagnosis dictate what they do.

There are a variety of groups for herpes and HPV: Some are geared to support and education, others are more social and some are designed specifically for dating. How would you describe your group?
Our three mainstays are support, social activities, and education/awareness. Our focus shifts in proportion based on the needs of the group. For example, if a number of people say the have no place to go over the holidays, we might have somebody host Thanksgiving dinner. When we became aware of the impact of STDs in communities of color, we reached out by having a multi-cultural potluck and doing an interview with a predominantly African American targeted radio station. 

Unlike other groups that define themselves as social- or support-oriented only, it sounds as if you’re integrating the two.

Herpes and HPV are multi-layered in how people are affected, which is why we don’t separate the social and support aspects. There’s only so much you can get from either one. People sometimes isolate themselves following a diagnosis, especially with herpes. A sense of shame often keeps people from reaching out for the support they need.  Folks will call me and say ‘you’re the first person I’ve talked to about this in all the years since I was diagnosed, and I haven’t dated anyone because I don’t want to have to have the talk or possibly give it to someone else.’ It’s just amazing to me how much these viruses can really stigmatize somebody for their entire lives if they let it. 

For someone in that situation, having social activities within our group is a way to realize that life isn’t over. By opening and sharing their stories, we can tailor the support and education that bests fits their needs. This will, hopefully, give them encouragement and confidence to flourish beyond the group.

When people reach out to your group, what are they seeking?
Not too long ago I created a poll on the site asking “what is the hardest thing to deal with after being diagnosed?” and the choices were physical symptoms, self esteem (I feel like I’m damaged goods); relationships (scared I’ll always be alone); and social stigma (how society responds). I was surprised to see that while nobody said physical symptoms were their biggest challenge, 65% of those who responded said their biggest fear is they would always be alone. This is why we work so hard to help people realize they shouldn’t isolate themselves.  At Charlotte H, they can form healthier relationships not only for romance but also for friendship and support.

Beyond the traditional taboo of being associated with sex, what do you think drives stigma and shame with both HSV and HPV?
I think unlike other diseases and medical conditions, it’s pretty socially acceptable to make fun of herpes and HPV. Compared to HIV/AIDS, herpes and HPV typically don’t represent a life-threatening diagnosis and probably won’t necessitate life-long therapy.  Society thinks we can make fun of herpes or HPV (especially if you’re talking about warts) because while they’re for life, they don’t kill anyone.
Having someone with HSV, HPV, or any other STD stand up and advocate is important, because it allows all of us a look beyond the diagnosis to see happy, healthy, and normal people. However, stigma is sneaky in that it sometimes thwarts this type of outreach, making it difficult to engage one of our most effective tools. It’s kind of a Catch-22!

How do you counsel someone in coping with this?

The first thing is giving yourself permission to be upset. It is normal to go through the classic stages of grief: denial, anger, bargaining, depression, and eventually acceptance. It was important for me to recognize and allow my feelings. This is not wallowing in misery; it’s about not beating yourself up for anything you may be feeling. 

The next thing is not to become isolated. The last meeting we had a lady there only a month after being diagnosed and I was so proud of her, because sometimes it takes people years to get up the courage to come out to their first event. I’ve had people tell me they’ve circled my neighborhood four times before they knocked on my door, they were so scared. Get out, live your life, meet people, take advantage of support and counsel from others who are knowledgeable about herpes and HPV, or who understand and have gone through the same process.  It’s not a quick fix, but you’re going to be ok.

How do we begin dismantling stigma?
We start in our local community, to show tangible people who live next door. I’ll say it again, there’s value in having someone who is diagnosed with herpes or HPV take the initiative: one of the things we want to do for 2010 is the calendar that I want to call “I am beautiful,” with the idea being for people with HPV and HSV to say “this infection doesn’t define me, I define MYSELF!” You can see they’re a student, a mother, a teacher. A friend, and actually see faces and personalities. Above all, you can see they are no different than others who haven’t been diagnosed with a chronic STD. 
Our group has also made presentations to county health department staff, including physicians and nurses, and we always emphasize that health care professionals can become somewhat desensitized to herpes and HPV diagnosis, perhaps because these infections typically aren’t serious in the sense of a life-threatening illness. This diagnosis might be “just herpes, just warts, just an abnormal Pap test” to them, but not to the patient. I’ve heard stories of people receiving their diagnosis over the phone or through a letter! With both herpes and HPV, people need appropriate counseling, including a sense of how common both infections are, how to be responsible partners, and resources for emotional and social support.

Talk a bit about what you offer online, say, if someone from another state or country reaches out to you?
We offer a message board, currently set up as a Yahoo! Group.  We have over 1,200 subscribed members, from all over the world.  Another service is our online-hosted chats; our support chat is every third Tuesday of the month at 9 pm ET, and anyone can jump into a chat room and ask questions about the group, or ask for help related to support. 

Also, we have a database of people who volunteer their email address and/or phone number in case somebody in crisis needs help right away. I put my own phone number everywhere! I think it can be helpful to connect with someone having the same experiences as you. I went to numerous counselors trying to accept my diagnosis, and they just didn’t get it, why it was such a big deal to me.  It can be a traumatic experience to get diagnosed and it’s hard to talk with partners. The emotional impact is such an area of need, and that’s why we place such importance on one-to-one contact.  While we provide a great outlet for support and fellowship locally in Charlotte, we definitely welcome those outside of the Queen city to take part in our online community too.

Contact Pam through www.charlotteh.com.