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SupermansJustice

I am so sick of the stigma. I am so sick of worrying about transmission everyday

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SupermansJustice

I need to get something off my chest...

HSV impacts the mental status of individuals. HSV makes people feel sad, angry and fearful. There is a lot of guilt, shame, and blame. People are concerned about transmission, dating, disclosing, and sex. There is a lot going on and that's just the psychological stuff.

There's the physical aspect of being in pain and discomfort all the time. There are support groups. There are 61,000+ people on this website and hundreds of users here everyday. There are tons of forums (subreddits like r/herpes or r/HSVPositive).

So we want a cure - right? So we want better treatments - right? So we want better and more research - right? So we want our scientists to have more funding - right?

The CEO of Genocea (making a therapeutic vaccine for people who have HSV) said on Honeycomb that a petition with a lot of signatures would be very welcomed in any company that has conversation with the FDA on the topic of herpes. At this time, GEN-003 (from Genocea) is slated to hit the market (if approved) in 2021 at the earliest. Sorry @Chip Clark I had to refer to your comment (seen below)

I took the liberty of making a petition (seen below) because I am frankly sick and tired of being sick and tired. I am sick of not having better treatments. I am sick of having to worry about transmission. I am sick of being in pain every single day of my life. I am sick of being worried about being rejected because someone else was so worried about their self-esteem and rejection that they couldn't be honest with me and exposed me to the disease despite having lesions that were not visible to me (I used protection). I am sick of hoping that someone will come out with a cure every single day of my life. )

This website has over 61,000 users. Some come because they can't deal with this disease. Some come on this website every day hoping to find some new medical breakthrough. We can keep saying "why doesn't the FDA care?!" "Why don't doctors care?!".

Here's the truth: They may not even understand the toll herpes has on the people suffering from it. Maybe that's because some people with herpes do not suffer. Millions of people do suffer from it though, but are so unwilling to speak out that their voices are never heard. As a result people never truly understand what it's like to suffer with herpes. It is our duty to help the FDA, NIH, and the CDC understand how much this disease has impacted our lives. How much longer are we going to wait and let life pass us by? No one is going to save us. We have to save ourselves.

What really gets me? A lot of people with herpes are suffering every single day, but they aren't willing to do anything about it. People suffering with herpes have given up on asking for help because of concerns about stigma surrounding the disease. How much longer will we wait and hope for someone else to change our lives? If we aren't willing to advocate for change - we are just sitting ducks waiting for something that may never come.

So... Sign this petition for yourself.

Sign this petition for everyone else suffering from herpes

Sign this petition for the hundreds of millions with herpes who are at greater risk for contracting HIV - and for the ones who contracted HIV not realizing there was that increased risk (and didn't even know they had HSV because routine testing is not recommended)

Sign this petition for the babies who contract neonatal herpes (which can be fatal) and their parents who have a broken heart seeing their newborn covered in lesions and deathly ill - and for the babies who have passed

Sign this petition for the people who can go blind because of herpes - and for the ones who have gone blind

Sign this petition for the people who get herpes encephalitis - which is fatal - and many of which if they do survive will never recover neurological function - and for those who have lost their lives due to herpes encephalitis

Sign this petition to protect your loved ones from contracting herpes - because a prophylactic vaccine would be important and a therapeutic vaccine would help decrease transmission. New medications would help decrease breakouts and transmission

Sign this petition for all of the people who still get breakouts all the time despite high doses of medication and are risking damaging their other organs just to go one day without pain or discomfort

Sign this petition so people can go one day without thinking about herpes

Sign this petition so people don't have to worry about transmitting this disease

Sign this petition to make everyone's lives better (whether they have herpes or not (because as it stands - everyone is at risk )

Sign this petition because the very act of kissing someone you love can bring that person lifelong pain and suffering

Sign this petition so you can disclose and say - but I don't shed the virus anymore and there's almost 0 chance I can transmit this to you

Sign this petition for better research, better testing, more awareness, more funding, more treatments, and less stigma

Sign this petition to change this world

https://www.change.org/p/please-read-this-if-you-suffer-from-herpes-or-know-someone-who-does

Because research and funding is so limited, it may take years upon years for patients to have access to treatments and there is no guarantee for something new to hit the market. The last time a non-topic agent was FDA approved for herpes was in the mid 1990s.

The aim of this petition is to increase awareness and funding so that patients can have access to medications sooner. Many people with herpes see this daunting road ahead without new treatments and are willing to consider experimental therapies (that have not always been tested on animals) because they have uncontrollable outbreaks and pain. This is not safe. This is not necessary. People should not feel like they have no options.

This petition is being sent to the FDA and CDC (trying to find the NIH point person). It IS being sent to the house of representatives and the senate. It is being sent to politicians all over America. Every company, researcher, and scientist working on HSV will take notice if we get enough signatures. There's hundreds of millions with HSV-2. There's a few billion with HSV-1. That's a lot of people being impacted by herpes. We need more than 102 signatures to make a chance. Sign and share. Tell a friend, co-worker, family member. Share on another forum. Share on FB. Share on twitter or reddit. Share with your support group in person.

We are NOT asking for money. We ARE asking for you to sign the petition (with whatever name you deem appropriate) and whatever e-mail you'd prefer. If you comment (and explain reasoning for signing) on the petition, your name is revealed. However, you CAN sign (with no comment) and your details cannot be seen by the creators of the petition or by anyone else who signs. Comments would be helpful though to help people understand how many people are suffering.

https://www.change.org/p/please-read-this-if-you-suffer-from-herpes-or-know-someone-who-does

What did I miss? How has this disease impacted you? Why is change important to you? Please sign. Share your thoughts.

Edited by SupermansJustice

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      thanks for listening the doctor at PP suggested I find one so I don't feel so alone
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