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    • Just a human being
      People say they want a cure but some days I wonder. If you express how stressful it’s been to support a small cohort through treatment with limited evidence most do not understand, when you ask for support or your struggles to cope with people’s trauma in treatment, or the ingrained societal perceptions, when you try to talk about the evidence it’s like you’ve done some evil thing! Apparently going against the grain to do what’s right is not worthy of human understanding or support! Expressing human vulnerability also appears to be incredibly evil! Damn! Any weakness or difficulties damn your just not worthy of care, support or respect!  After over a year in the space it’s so clear to me why there has been no progress. You are completely ostracized from the community for speaking out on this topic. How many are voiceless here too scared to speak? Yet we rarely hear from you. When you are successful you just disappear (Of course because we don’t hear from you you don’t exist! You must be a “conspiracy theory”. And even if you did then you would just be anecdotal and oh yeah that publishing evidence when they attempt to discredit it... hmm be interesting to hear the “conspiracy” stories on that one...)and I understand why as no one would listen to you anyhow! I hope for anyone reading this you get out alive lest you become a lost soul in purgatory stamping out hope for others due to confusion weaved in science and medicine.   
    • MikeHerp
      Not directly on HSV, but this general overview of where gene editing is, is a very good read. Recommend at least skimming it. A lot of excitement is building around gene editing.  https://67c5cfaa-bdc0-42a5-95c4-a822adc972c7.filesusr.com/ugd/80a6fd_a53ed12021a54292bb50ed1255e31118.pdf
    • Just a human being
      It s not really possible to ban anyone from this forum. Some people would just get back on and create a reign of terror in their wrath. I’ve seen it before. In the end everyone has to accept them and it teaches the group tolerance. Trust me I’ve been through the same feelings and I don’t want to act like I’m always Mr positive or anything cos I am Just a human being!And honestly we need to consider others welfare. They would be lost without this forum. I think if you took it away they would suffer serious trauma. It just takes a small amount of time to work around it! I have deep respect for @MikeHerp it takes a lot of work to get something like this off the ground! I think genetic research is very valuable and important!  I have duel interests human systems and health and agriculture. In the agriculture realm I’m not a big fan of say Monsanto’s brand of genetic research in application. I am a big fan of genetic research to inform plant breeding!  I think this is good work that will be insightful for humans in the future! Don’t take a few difficult people to heart! Trust me I do know it’s difficult.  I didn’t even read a single comment of theirs! Wow that’s big for me! Back to Fred Hutch....    
    • MikeHerp
      What I find interesting about this trial is that even though half life is 25 days, measurements of shedding and lesions will be done until nearly 4 months.  Maybe they expect the effect to last longer than the half life (maybe the binding effect survives longer than the half life). 
    • MikeHerp
      Message from FHC philanthropy:   “There is a small glitch with the website that we are working on. The page is still live, located here: http://engage.fredhutch.org/site/TR/PersonalFundraisingPages/General?px=1802786&pg=personal&fr_id=1574 I will need to request a new link to "fredhutch.org/hsv" for you on Monday, which is not working right now, but you can access the site from the link above in the meantime. I will let you know when that is fixed”
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SupermansJustice

Thank You Everyone!!! - Our Petition Is Growing Quickly!

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SupermansJustice

Hello all 

I just wanted to update everyone on the current status of our petition. In just one week we gained 169 signatures! From just Thursday-Friday alone. I think as people from other social media websites see this....I think a lot of people are hiding and do not feel comfortable talking about it openly. We can be the voice for them. We can help fight the stigma and in turn we will give them hope and something to feel better about and support!

The petition has been worked and re-worked a few times as people have provided feedback and weighed in. It's no easy task talking about something that is so stigmatizing. If you say people are suffering - they feel like you're perpetuating the stigma. If you say everyone is doing fine, then people say "what's the big deal? why is this even a petition?". The truth is there are people on all ends of the spectrum, but no matter what spectrum they are on , no one wants to be responsible for transmitting and incurable virus given the tremendous stigma it has. I think it is fair to say that a lot of us have issues because there is so much stigma, which makes everything so much harder. 

Here it is in it's current form

START

I get it. Herpes is a punchline.

For a majority of people herpes is manageable. They may never have symptoms or they get outbreaks 1x a year. They may never have a recurrence after their first outbreak. However, this is not the case for everyone. How did I get here? I had a sexual encounter - I used protection, but my partner did not disclose to me. I ended up extremely sick. I had fevers, chills, fatigue, severe sore throat, muscle aches, extremely painful sores around my mouth and genitals for days. I was told this was what is termed a "primary infection". As the acute infection began to subside. Any new skin lesion that pops up stirs up very concerning feelings. "Is it a recurrence?". "Will I transmit this?".

Psychological Burden

To be sure, there is no question that there are objectively worse diseases (HIV, MS, ALS, cancer, etc). I fully support research that will readily cure and treat those illnesses.

The advent of PREP has made the risk of acquiring HIV almost miniscule. It has been so successful that many people with herpes wish they (or their partner) could be offered a similarly effective treatment (medication or vaccine) that could make transmission similarly negligible. Some individuals have frequent painful outbreaks which can make sex painful, particularly for women. There are worse diseases, but there are few incurable ones that can be transferred between partners at high rates despite the best medical treatment has to offer. The result for some individuals with herpes is that it can impact their mental health. Some people feel sad, angry and fearful because of their diagnosis. The high burden of the stigma can bring about significant guilt, shame, and blame. People are concerned about transmission, dating, disclosing, and sex. The slightest physical symptoms can feed these psychological issues.

Sometimes we can’t see it, but it’s there

For hundreds of millions, this disease is not an issue. People will have it, and not even know it. However, for a smaller percentage, particularly those with HSV-2 and to a lesser extent HSV-1, outbreaks can be very common. It has been estimated that in people with genital HSV-2, for those individuals who have a history of genital ulcers, they shed the virus approximately 20.1% of the days and have lesions approximately 12.2% of the days. In individuals who tested positive for HSV-2 by blood test, but never noticed an ulcer, it was determined that they shed the virus on average approximately 10.2% of the time, and with the help of a professional, it was determined they were having lesions (they had not noticed) approximately 3.1% of days.

Reference: (http://jamanetwork.com/journals/jama/fullarticle/896698)

Unfortunately, this is not common knowledge. Many individuals (even health professionals) do not know that the virus can be transferred even without any visible symptoms. It can be this uncertainty of not knowing when and how much one is shedding that can drive someone with herpes mad while they try to protect their partners and loved ones. Condoms can decrease transmission by 30% (much higher for other STIs), and antivirals are 50% effective in decreasing transmission. They help, but they are far from ideal.

Funding and the stigma of herpes.

Paradoxically, the disease is considered by many (those with and without it) to be “benign” as many have no symptoms or rarely get outbreaks, and somehow is extremely heavily stigmatized. In the USA, above the waist it is considered a "cold sore" and not a big deal. Below the waist it is considered "herpes" and viewed as a scarlet letter. The stigma can be so great that a budding romantic relationship can be met with rejection once a partner discloses their condition. Unfortunately, some are so fearful of rejection, they do not disclose their condition to their partners.

We believe with better education, people could view herpes with a more realistic lens which would significantly help the psychological burden as well so individuals could openly disclose their condition and not be rejected because the condition is so heavily stigmatized.

However, due to the social climate around this disease, individuals with herpes (particularly genital herpes), do not feel comfortable asking for help from researchers or health professionals.

A Link between HSV-2 and HIV

The WHO estimates that 417 million people have HSV-2 (primarily genital) worldwide. HSV-2 increases the risk of acquiring HIV by 2-3x. In 2015, 2.1 million people were diagnosed with HIV worldwide. An efficacious prophylactic vaccine against herpes, would help prevent the spread of both herpes and HIV. This is particularly relevant in Sub-Saharan Africa, where the high prevalence of HSV-2 is considered to be an extremely strong driver of HIV transmission. References: 1. http://www.who.int/mediacentre/factsheets/fs400/en 2. http://www.unaids.org/en/resources/fact-sheet 3. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3563330/

What else can herpes do? Well these are some rare consequences of herpes infections. We would be remiss if we did not mention them as there are individuals who do fall into this category.

Blindness due to Keratitis: While it is rare, every year estimated 1.5 million new cases of herpes keratitis are diagnosed with 40,000 cases leading to severe keratitis or blindness. Reference: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3652623/

Neonatal Herpes: The risk of neonatal herpes has been significantly decreased with the implementation of cesarean sections and antivirals. However, it can happen and tends to be a bigger issue in resource-stricken areas. WHO Medical Offier Sami Gottlieb , who studies neonatal herpes globally, recently remarked “ A vaccine that could reduce the spread of herpes would result in many positive outcomes – including preventing infants from dying of neonatal herpes” Reference: http://www.who.int/reproductivehealth/topics/maternal_perinatal/estimates-neonatal-herpes-cases/en/

Herpes Encephalitis: While it is certainly a rare occurrence, herpes encephalitis can be a devastating diagnosis for a patient. Even with treatment, it can be fatal. However, a significant number of individuals who do recover do not regain their neurological function back and have permanent deficits. Reference: https://www.ncbi.nlm.nih.gov/books/NBK47447/

So what hope is out there? Well, I researched possible treatments(not yet available on the market) in hope to find which medications would decrease breakouts and prevent transmission. I did have some hope when I read about pritelivir, brincidofivir, and amenamevir (see references for results below).

1. Pritelivir (AiCuris):https://www.ncbi.nlm.nih.gov/pubmed/27997653

2. Brincidofvir (Chimerix): https://www.ncbi.nlm.nih.gov/pubmed/27582067

3. ASP2151 (Maruho): https://www.ncbi.nlm.nih.gov/pubmed/22351940

However, none of these medications appear to ever be coming to the market with any widespread use. If they do get approved, it will be at least 5+ years from now.

There are companies working on therapeutic vaccines for herpes such as: Genocea's GEN-003's is one of the most promising therapeutic vaccines which has shown to decrease genital shedding and lesion rates. However due to the FDA's clinical trials process this will not be released to the public until 2021 or later if it is approved.

The Future of Herpes Treatment: So here I am asking for help on behalf of hundreds of millions of people suffering. You don't need to have herpes to sign this petition. I promise if you do though, you are helping millions of people. People don't always feel comfortable talking about it openly, but you most likely have a family member or friend with the disease (it is more common than asthma or diabetes). You can help them too.

Because research and funding is so limited, it may take years upon years for individuals with herpes to have access to treatments with no guarantee for anything new to hit the market. So what am I requesting?

1. Ask the CDC to educate the public and health professionals about the disease

2. Ask the FDA to consider moving along trials (keeping safety in mind) for treatments that can help decrease transmission and outbreaks

3. Ask the NIH to help fund researchers, scientists, and health professionals to explore better treatments for herpes. Gene editing methods (CRISPR, etc). or therapeutic vaccines could provide great relief by helping decrease outbreaks and giving people with herpes the confidence that they do not need to worry about transmission

So...

Sign this petition if you have herpes and it’s no big deal for you

Sign this petition if you have herpes and you have to deal with frequent breakouts

Sign this petition if you have ever been rejected because of your medical condition

Sign this petition if you think herpes is heavily stigmatized and the public needs accurate education about the condition

Sign this petition so that individuals who currently have many outbreaks and shed often, can have romantic relations without having to worry about transmitting the virus

Sign this petition so you can disclose can say “There is a vaccine available to protect you and I rarely shed with my new treatment(s) so the risk of transmission is almost "0”

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

Sign this petition to change this world

Isn't it time for us to take better care of people with herpes? Isn’t it time we stopped looking upon them with shame? It is a medical condition like any other.

END

Please note: 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. Please sign and share. Tell a friend, co-worker, family member. Share on another forum. Share on FB. Share on twitter or another subreddit

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

Please any and all feedback. Some state it is a little lengthy and heavy on the science. However, I think if we plan to get people to sign and decrease the stigma, there has to be a scientific aspect to this where we can explain everything why it's so hard and what can be done.

This petition, while written in the first person, is not MY petition. This is OUR petition. I want a better future for ALL of us, so if you have feedback let me know

General Rules:

1. People said don't "fear monger" - it will increase the stigma (that's not the intention - but we do want to make it clear that some people do struggle with herpes physically and that it also had some rare consequences, and is linked to HIV

2. We need to go heavy on attacking the stigma as once that domino falls....everything else will be much easier. The psychological burden goes down....people start opening up about having the disease..awareness goes up..funding, treatments, research all of that. Also, people will feel much more comfortable and less ashamed!

Let's do this together everyone!

I do get down in the dumps sometimes (we all do with this disease), but today I'm feeling hopeful!

Edited by SupermansJustice

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moialbalushi

Why not to make a shout out for it here in the site ? Great to here that people are responding !!

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Jack123

Supermans Justice you are doing great work for this community!! Thank you!

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