Human beings love to share stories, and while it is fun to share the daily drama and exciting day to day affairs with one another, we do so because it helps us find meaning and understanding in our lives. Sharing these intimate stories isn't just about the story itself; it is also how we heal and gain knowledge.
While it's true that people only love what they understand, and only understand what they love, it is through the sharing of these stories that we may gain empathy from others so that we can begin to be understood and with any luck, deflate the stigma.
On this page, you will find people who have real, honest and sometimes painful experiences with Herpes Simplex. It is in these shared experiences that we may find hope and the strength to carry on and to let people in power understand the reasons why we need access to this vaccine and to ask for more research on the subject of Herpes. The Penny campaign is about many things, but at its core, it is about people and here are some of their stories - in their own words.
November 4th was the happiest day of my life. I Gave birth to a healthy baby boy. He was named after his Daddy. His name was Daniel, or DJ for short. My son Daniel passed away on December 2nd.
He had contracted herpes from me during birth, and unfortunately, we didn't catch it in enough time to save his life. Daniel was a miracle baby. I still remember the day I went into labor with him like it was yesterday. I was standing in the kitchen when suddenly my water broke. I was so excited, but nervous. I had no idea what to expect. I told my partner that it was time. We were both giddy but anxious too. Our first child would be here within a few hours! Surprisingly, I wasn't in any pain. When we got to the hospital, they told me that I would likely need to be induced since I ruptured 3 weeks early and labor wasn't progressing quickly enough. Sure enough, I was induced.
One morning I woke up and remember my butt cheek having a couple of tingles. I didn’t think anything of it so I lightly scratched it and proceeded to go to the bathroom. I decided to look at it in the mirror and when I did, it looked like a small spider had bitten me. I was nervous! Spiders and I, have a don’t see, I’ll leave ya be policy.
I decided to listen to my intuition and call the doctor, just in-case it was a spider bite. At this point it really only felt a little itchy so I wasn’t thinking anything of it. We all wake up with an itchy body part at one moment in our lives, right? I was grateful the doctor was able to get me in the next day, by the time I went to get my butt cheek looked at (awkward, I know). I had blister clusters forming, the cluster was no bigger than the size of a quarter.
The doctor called me back to the office & I had to show her my butt. She was pretty certain by looking at it that it was Herpes, however she took a swab test on a blister as well. When my culture results came back I tested positive for HSV 1 & 2. However, I have never had an outbreak for type 1, at least not one that I know of.
After the diagnosis I felt even more damaged, I didn’t think that anyone would want to be with me again. I hid from disclosing right away out of shame & fear that those around me would find out. I was numbing out on food & alcohol (not a good combination for this virus).
But then I realized this wasn’t the life I was meant to be living & I made the decision to start investing in myself. I tried self-help books in the past but nothing changed the trajectory of my life more than having someone that supported me NO matter what. I started going to a bunch of in person personal development seminars, investing in multiple coaches, and spent time doing deep inner healings to release the guilt & disgust I felt inside about having herpes.
I learned that there is no love like the love that you can give yourself. I learned to accept every single inch of my body regardless if I’m having an outbreak or not, I treat my body & energy with the respect that it deserves, I am able to set firm boundaries with those around me, and I feel completely free to be ME.
Stephanie Boyd, @ Stephanie Boyd Coaching
When I think about sharing my story of contracting herpes, It feels so much more than just about one girl and an irritating skin condition. My story has many layers. There is a lot of unpacking, many years of growing, and a great deal of beauty wrapped into an unexpected gift.
Since I am not a writer but love to share, I hope that you stay on this ride with me. Perhaps with any luck, you will find some bravery, value, and some much-needed hope for the future.
I was born into a home filled with emotional abandonment. My father had his own struggles and, to this day, insists on being touted as a self-proclaimed "high functioning alcoholic." As for my mother, well, she had her own emotions to deal with. So much so, I always felt she was preoccupied, and I never felt a genuine bond with her. This heartache I felt took many years to accept and repair.
Part of this experience helped me explored the depth of my parent's struggles and emotions and allowed me to look inward to explore mine as well. This wasn't very easy because I was looking at my parents from the eyes of a child, looking for guidance. Later as a teenager, I needed some understanding, some emotional support, and some love.
These natural human experiences set me on a path eagerly and outwardly, searching to fill a deep void. I thought boy crazy was real, that turned into being afraid of commitment, sexual exploration, and thinking, finding "the one" would give me everything I had been looking for that no one else had been able to fill. A way to fill that emotional void.
Because of my past experiences, I had created damaging beliefs like I am not enough because if I were, then my parents would have paid more attention to me. I have to be perfect to earn the love I wanted, which is probably why I got attention when I got straight A's and did exactly what was expected of me. I could keep going, but you get the point. We are all young and impressionable kids. Often we make things up whether they were real or not. A sort of coping mechanism. These thoughts in our heads become our beliefs, and the stress of being unfulfilled can be emotionally debilitating. So it wasn't that surprising that this lack of emotional support turned into a new chapter in the book of Clarice called "boy crazy."
My son was just 3 months old when we first noticed a tear/open skin behind his left ear. It was seeping and we went to our local ED. They tried to tell us it was Impetigo and had us put Mupirocin on it. Within a week it had spread to the side of his face. Pediatrics then told us to keep putting the ointment on and also gave Keflex. The lesions spread like wildfire. Misdiagnosed, the ointments did not help.
Eventually my sons whole face was broken out and pediatrics called another hospital to let them know we were headed in so they would be expecting us. Terrified, they took us right in, gave my son a spinal tap, lots of tests were ran and IV meds were given. My son, Evan was diagnosed with eczema herpeticum, HSV. 4 days in a pressure hospital room. We have had continuous care and my son was over medicated and treated for HSV, on Acyclovir daily until about a month ago.
He gets just as many outbreaks off the medication as he does while on it. We did meds, wet wraps. We are at a loss as far as treatment goes. We have come a long way from the first initial outbreak. Do not kiss babies. Stop the stigma. MY SON ALMOST DIED. So many people are not educated on how dangerous the virus can be. Please spread the word. We are going to Boston children’s hospital in 3 weeks for a second opinion and seeking further treatment options for my little one.
Today as I write this, I am on the fourth week of an outbreak that will just not go away. Even though I received the vaccine, Theravax (now called RVX201), and it helped me tremendously, there is no place for me to continue receiving this treatment. A therapeutic treatment that stopped my outbreaks in its tracks and allowed me to have a life again. It kills me that this treatment is not available for me and many others. It was the only thing that ever worked for me and I tried everything.
I was almost 20 before I ever had sex and that was with my college boyfriend. It was a good relationship – lasting over four years with a young man who truly loved me and with whom we parted as friends. Unknown to me, it would be the last relationship of my life where I would be STD-free.
In my lifetime, I have only slept with four people. It was my second boyfriend that gave me the unwanted gift and from the very beginning, this roller coaster relationship was troubled. As a child of a divorced home, whose father was often absent in my life, I didn’t have the emotional tools to just walk away. I always thought that if I just tried harder I could make him love me… the way I loved him.