The Helper

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Emotional Support

Metro Detroit HELP

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In this issue we feature a conversation with JoAnn Purkey, one of the coordinators with the Metro Detroit HELP Group. Established in 1980, “MDH” offers support and education for those with herpes and/or HPV. Visit the group online to learn more.

What led you to become involved with Metro Detroit HELP?
It all started when I attended my first MDH meeting in May of 2002. I had been a nervous wreck about attending, scared actually, but I knew this was something I had to do for my own well-being. I was newly divorced and although I was diagnosed with herpes in 1998, while married, it was only later that I was faced with those same emotional feelings that others have when newly diagnosed.

I was very fortunate to have Denise, the then Social H group leader, offer to accompany me to that first HELP meeting. Rather ironic, as I am a very strong woman, and normally have no problem facing my fears, but this time, for some reason, I couldn’t do it alone.

However, once in that room, surrounded by people no different than I, I quickly felt at ease and regained my courage. Hearing their stories, I knew right then and there that this was something I wanted to help with.

I began attending meetings regularly, eventually not for myself but instead to be there for others. I very quickly accepted having herpes, and wanted to help others accept it, too.

What are the common questions and concerns of your HELP Group members?
Those who are newly diagnosed often come to us in shock, wondering how could this happen to them. The questions are all similar: how will I ever find love, who will accept me, how can I prevent the spread of herpes, can I have children? Mainly, they want to know if they can keep on living full and happy lives, and the answer to that is yes.

What advice do you offer members when they’re concerned about partners and relationships?
I don’t offer advice, but rather share the experiences I have had while being a part of our H community now for 10 years not only within the realm of our Support Group, but also having been the Social Group Leader for nine years as well.

We are fortunate here to have many who attend our HELP meetings on a regular basis who have had Herpes and/or HPV for a while and come to be supportive of others, but the newly diagnosed and those who may have had herpes or HPV for a long time but are just now finding us. We do suggest brochures, books, web-sites for any questions that perhaps we were unable to answer.

I don’t sugar coat, because there are going to be people who reject you for having herpes or HPV and that’s ok because when you are in the dating world, people get rejected for all kinds of reasons. It’s really no different than you rejecting someone for any number of reasons. But I have also seen many wonderful relationships that have developed over the years, many which lead to marriages including several marriages that I was honored to have been a part of. Having herpes or HPV doesn’t stop us from living life to the fullest!

How about someone who’s newly diagnosed and having difficulty with the emotional side?
I do tell someone who is newly diagnosed that coping is a process, there are stages and each person is different. For me, once I accepted having herpes I also found peace with it. I realized that it was a medical condition, one that was not going to kill me, one that is manageable and still allows me to do all the things in life that I did before. I also realized there is no shame in having a medical condition!

I also tell them that being around others with herpes or HPV can be very helpful, just to know you are not alone.

 

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 HSV

Over a period of many years working in call centers focused on sexually transmitted infections (STIs), I have answered many questions for callers dealing with genital herpes simplex virus; in fact, most calls to ASHA’s STI Resource Center involve herpes questions. Callers frequently ask about symptoms, but sometimes the inquiries are as basic as “What is herpes?” To give callers some perspective on herpes, I usually ask if he or she is familiar with oral cold sores, which most people seem to be. I tell them that oral herpes is generally transmitted by kissing, often acquired in childhood from a family member with a cold sore. I explain that genital herpes is also caused by herpes simplex virus (HSV), but a genital infection relates to sexual transmission and this aspect alone is impactful on people.

Some callers think that genital and oral herpes are caused by completely different viruses, so I address the issue of two different strains of herpes simplex, with HSV-1 usually infecting the mouth and HSV- 2 most often experienced as a genital/anal infection. When callers ask about the symptoms of genital herpes, I tell them it is a skin outbreak which can look like other skin conditions, and that the severity of the outbreak varies with individuals. Sometime callers mention that they have read HSV is transmitted by skin to skin contact, so they worry about harboring the infection at numerous skin sites. I explain that HSV infects mucous membrane skin like the mouth, genital and anal area and that herpes does not infect other, thicker skin areas unless there is a cut or break that allows the virus entry.

If the caller has a specific symptom they are anxious about, like a rash or bumps, I tell them that the most accurate way to diagnose a suspected outbreak is through a culture done with a sample taken from a lesion. If the symptoms have gone away or if a caller wants to know if he or she is infected I recommend a HSV type-1 and type-2 antibody blood test. I explain that the most accurate tests are those known as type-specific HSV blood tests, as opposed to some older, non-specific tests that aren’t as reliable. Sometimes callers think that because HSV can be diagnosed with a blood test, the herpes virus is in their blood. Some callers even want to know if they can donate blood after being diagnosed. I let them know that HSV is not in the blood and that the test is simply looking for antibodies the immune system produces against the virus, not the virus itself. [See Ask the HRC in this issue for more on HSV blood tests. Ed.]

Callers with genital herpes are often concerned about spreading the virus to other areas of their body, such as their mouth or eyes. I explain that this is difficult to do, especially once antibodies have developed. I mention that if this were a common problem, then millions of people with oral herpes would be spreading it to their genital areas! I would recommend that if they touch a lesion, just wash their hands. Another concern is nonsexual transmission of herpes to, for example, a family member. I explain that the herpes virus does not live long outside the body and is not known to be transmitted from objects such as towels or toilet seats. Many callers have read about the term “shedding” as it relates to HSV. I explain to callers that while herpes symptoms involve a skin outbreak, HSV actually resides in nervous tissue. With genital herpes, for example, the virus is established in the sacral ganglia, or nerve roots at the base of the spine. (In people with oral herpes the virus is in nerve tissue at the top of the spine, called the trigeminal ganglia).

Periodically, the virus travels back up the nerve or nearby nerve to the skin where the person was infected. It “sheds” off the skin. When this happens, there is sometimes an outbreak and symptoms. I then explain about “asymptomatic shedding” which occurs when the virus travels up to the skin, but there are no symptoms. I explain that it is estimated this happens about 10%-13% of days during a year. It is believed that the longer a person has herpes the asymptomatic shedding may decrease. I discuss that condom usage may reduce the risk of transmission and also that medication (such as Valtrex taken daily) may help. I would encourage callers to discuss their concerns about treatment with their health care provider.

Hopefully by providing callers with factual information they gain a better understanding of herpes simplex virus. Also addressing caller’s emotional concerns and common misconceptions the anxiety level they may have is hopefully lessened by the end of the call. I encourage callers to go to the ASHA website for additional information as well reviewing the publications information on herpes simplex.

--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.

 

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