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22 Years Old (just got diagnosed with hep c)

Hello,

I am a 22 year old male (with two children) and have just gotten diagnosed with hepatitis C. I just have some questions about hepatitis and getting through life with it.

Here's my current situation:

I have two beautiful little girls - I just got out of a 5 year relationship with their mother (in September). We're just finalizing our custody battle with the kids (I get them 3 days per week) - I own an pretty successful Internet marketing business and have pretty much been stressed out since September (since the whole breakup).

I just starting seeing this other woman (8 years older than me - started seeing her in early November)... things were going along perfectly until I just found this information out from my doctor. When I told her she completely got disgusted and she's afraid she has it too. But the worst thing about it is that I think she is scared to even touch me. I laid down with her last night and she was completely on the other side of the bed and wouldn't even really go near me.

Obviously, this may not work out because of the whole hepatitis C situation but I am afraid that this is going to happen with every woman I meet in the future and in the end - I'm just going to be a lonely bachelor the rest of my life. I mean how do you even meet people when you have this disease? I'm a shy guy in general and am a pretty heavy drinker - now that alcohol is out of the equation, it's 1.) going to be hard to even talk to women. 2.) If I do meet another woman, how do you tell them this? I would think 19/20 of them would immediately get freaked out and run... far away. I know I should be more worried about my health but this is one of my main worries.

I just found out two days ago so I haven't talked to too many doctors about this. I just have a few questions.

1. I'm only 22 - I just had an ultrasound of my liver and it came back 100% perfect. What are the chances that they are going to put me on meds?

2. Since I contracted this early - do you think my liver is going to be blown out by the time I'm 50?

3. If they put me on medication and future tests show that the virus has been taken care of (for the time being) am I allowed to drink alcohol (maybe 1 time a week - 6 beers)?

4. How do I go through life like this with such little support? My mom died when I was 16 and I have little contact with my dad. The only people I really have to talk to are my two sisters (which I don't speak with very often).

5. I have really bad anxiety so I take 25mg Xanax twice a day. How am I supposed to cope with anxiety if I can have no Xanax or alcohol to settle me down? Can you still take anti anxiety meds?

6. If/When the doctors put me on meds will this make me loose weight? I am a freak about my weight and would hate to loose a lot of weight (would shatter my self esteem even more).

7. Is my doctor going to put me on a strict diet (e.g. no salt, caffeine)?

I have no idea how I contracted this. I have never used needle drugs but I did get one tattoo but I got it when I was 16 and I seen the professional place pull the needle fresh out of the box. The only more realistic thing I can think of is all of the IV's that have been stuck in my arm and the few surgeries I've had (never needed to receive any blood).

I have no idea what type of Hep C I have or how much of it's even in my system. My doctor is still doing tests on it to check the load/etc.

Thanks for all of your answers and support. I just feel really down right now - the only thing that is keeping me sane are my two daughters (both younger than 4).
31 Responses
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Avatar universal
I wanted to commend you for looking out for your kids and thinking ahead. My opionion is being proactive is always a better choice than being reactive.

You sound like you have a good head on shoulders, that you also have good resources.

SHOULD you decide to treat,  perhaps lining up a family member to help with children "just incase" to take care of the things like snacks, dinner all the physical needs. That way you can focus on just being Daddy, who loves them. Perhaps a family member, a friend?

People all react different, the first two times I did treatment, I had no problem working, infact I think it helped. My own problem was emotional and that was fixed by antidepressants, which you if remember well, you are already on.  I also ran my own business.

Which brings me to the Phychatrist, part of the reason he wants you to have one, is one of the side effects can be serious depression, suicidal thoughts or actions. This is a small %, but a serious one. Shoud for some reason you should melt down, they want some one in place to handle that. GI's are not qualified to handle those needs. If you suffer from anxiety already,  it is a good move. Proactive.

My GIs have all said Milkthistle is one of the few herbal remedies that are ok to take. But again this a choice for you and your Doc.

Best of luck in what ever you decide!  You have a great attitude, so as hard as this decision is,  you will get there and I have no doubt you will make the best one for you and your children,

Deb
Helpful - 0
397634 tn?1201227063
First, I 'm new here and don't know quite as much as the people who have been here doing research on the subject. That being said, I just wanted to tell you that I contracted hep c when I was about your age. I'm now 58 and only recently have I begun to have symptoms such as weakness and loss of appetite. I've known I had it for the last 10 of those years, but had decided against treatment because of the severity of the side effects and the possibility that some of them could be permanent; remain after tx is over. I was hoping for a kindler, gentler cure. When I was diagnosed, I was told by a gastrointerologist that getting it while I was young was probably in my favor. Now that I have symptoms I'm waiting for a new set of tests to see if it is indeed the hepatis c that's bothering me. Of course, everyone reacts differently to both the disease and the treatment, and there are the genotype, viral load, and degree of fibroses to take into consideration. I wish you good luck with your business and your family. I've always told the women in my life the truth about the disease, at least since I've know about it. People are frightened at first, but they have a great capacity to understand given a little time. There is a study I remember reading that showed about a 2% incidence of contracting hep c from an infected spouse. I can't remember where I read it, but I remember that it was an Italian study of some 1,110 monogamous couples. I found it on the net.
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Avatar universal
Drew....get a biopsy.  Then you'll know what stage of damage, if any, that your liver is at.  If early stages, I would hang in there for awhile and just take care of the important things in your life...your young kids, your business, etc.  I'm 47 and stage 1, grade 1, low damage but I'm older and for me, I feel no more time to waste.  As the others have said, you have much in your favour right now.  Assuming you're low or no grade damage, you can afford to wait for awhile.  I see talk in these forums of teleprevir, boceprevir, Alinia and other research indicating that the treatment you go through if you wait it out a bit may be less brutal than what it currently can be.  The ultimate decision is yours, of course, based on what is ultimately important to YOU.  

I understand the sentiment of wanting to get this done NOW and get it OUT of you....take some time though to sort through all the implications and make sure it makes very good sense to you.

And get that biopsy.  That will help you make a good decision health-wise.

You're doing amazing....educating yourself to a good degree already...and I like your attitude and approach.  You'll do just fine.

Good luck ongoing, Drew.

Trish
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Avatar universal
One other thing - it's weird... I started taking Milk Thistle earlier this year because I started drinking kind of heavily (just took it for that sole reason) - I'm wondering if I should take it again? It's probably pretty debatable... maybe good for some people.. bad on others?

Opinions? I've read a few threads about it on this forum and it seems to be debated. Maybe I should wait until after I get my next enzyme tests back and then start taking it to see what effect it will have on the enzyme levels on the next test afterwards.
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Avatar universal
Yes,

I'm located in the southeast Michigan area. I have decent insurance through my  business and I just asked the insurance company how much it would cost me and they told me only $40 for both meds ($20 a piece) so that's very good news.

I'm thinking about finding a hepatologist through the either University of Michigan or Henry Ford hospital (unless any of you can recommend one better). I don't have the slightest clue on where the good ones are located at.

I'm not sure when I'll be able to take the medication. I watch my kids by myself 3 days per week and on top of that I have to run my business which takes about about 6-7 days a week of my time. The good news is that I don't have an office currently and I am currently running it out of my own house. I outsource a lot of my work - but from what I've heard this medicine makes you very forgetful which isn't good for this business.

However my only real concern is being able to take care of my children while on these meds. :-(

Since I am so young I'm wondering if I should wait until potential better medication comes out? A medication that may work better? I read in another thread that each time you do tx that every time you try again afterward that it may be less effective... is this true or is this unproven?

I want to get this over and done with but I am just unsure if it is the right time in my life to treat myself. I just started my business up a few years ago and everything is going perfectly... I just don't want the tx to cause me not to be able to think right in terms of my Internet business. Another concern is the fatigue (I have to always be on my feet because I have a one year old and a three year old). My last concern is the brain fog that people are discussing ... just wondering if it could get bad enough where I wouldn't be able to watch my kids correctly and also run the business right.

My doctor also gave me a phone number to a few therapists (wow, do I need one right now... I've been pinching myself all day ...trying to wake up).. I'll try and get their opinion on things as well.

Tomorrow I guess I'll be going to go around and try to get as many medical records as possible. I'm pretty sure that I've had a few hep c tests in the past... I just want to try and pinpoint it down to a certain time period of which I could have gotten this.

Thanks very much for your responses - all of you are very-very wonderful people!
Best wishes to all,
- Drew
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Avatar universal
My best suggestion would be to research Hep C and get in contact with a gastranolgist in your area or internal medicine doctor who specializes in Hep C and could give you information to share with your girlfriend.  I have been with my boyfriend now husband as of last year for almost five years now and he still tests negative for Hep C and was just tested within the last month.  The rate of transmission in a monogamous relationship is 3% or less.  Obviously this is a disease that attacks the liver so consumption of alcohol is not reccommended.  There are different strains of Hep C as well and depending on what strain you have determines how long treatment would last if you decide to do treatment now again these are better discussed with your doctor.
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Avatar universal
Deb makes a very good point about youth being on your side and this can work for you whatever you eventually decide to do next.

If you do decide to treat soon, being young means you probably will have a better chance of handling side effects. If you don't decide to treat, being young means you have plenty of time to see what the new batch (and future batches) of Hep C treatments brings -- assuming your biopsy result gives you time to wait.

People react in all different ways after the shock stage. The two extremes I would imagine are to ignore it completely and go on with life as if the diagnosis didn't exist -- and the other extreme is to treat immediately because you can't see yourself living with the virus one day longer.

Most of us fall somewhere in between, and ideally you will take the time to educate yourself more before making decisions moving forward. You also still need some important parts of the puzzle like your genotype and perhaps a biopsy and perhaps a new doctor to also help guide you.

-- Jim
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Avatar universal
Agrees with Jm here. The shock is of it is terrible.  I can remember thinking I would drop dead any minute.

Well I haven't, you got some things going for you, your young, younger people respond normally better to treatment and UND.  (that does NOT mean older folks can't too)
But you do have that going for you.

You still haven't gotten your geno type or viral load back, Try and relax and take it easy.
Life style changes are hard,but possible, and soon you do not miss even the occasional glass of wine or beer.

Jm I think is also right and infact I have had several Docs tell me it could be worse, could be cancer, aids, so many things.

Education is crucial, both for you and family, girl friends, ect, I am married and that was my first question, OMG what about my kids and husband.  Relax about that also.
You have youth on your side, and there is and will be a lot coming into play, new drugs.
.
Have courage, you will be ok!  A long tough road, but have courage!

Deb
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Avatar universal
Sorry about that. Probably now is the time to start collecting records (blood, ultrasound, etc.)and finding a hepatoloigst in your area. If you don't mind telling us what part of the country you're in, maybe someone here can recommend one.

FWIW just about everyone goes into shock when they get the news, but it soon passes as you get to learn more about both Hep C and your options. Not to belittle it, but there are many worse things you could have.

-- Jim
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Avatar universal
Well I do have it. :-(

My VL is currently at 371,000

My doctor said the genotype will come back within 5-7 more days. I'm in shock.

-Drew
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Avatar universal
Drew: I visited my GI today and asked him if i'm HCV positive should I "also" contact a hepatologist and he told me no and that he handles hcv himself. I'm not sure if he is just saying that for the extra money or not but either way I'm going to see a hepatologist.
------------------
Good call. And make sure to get your own copies of all blood tests -- past and present -- as well as copies of all procedure reports like ultrasounds, etc.

Good luck, Drew. From the purposefull, intelligent and sensitive attitude you demonstrate --  I having a feeling things are going to work out a lot better for you than you now think -- whatever the outcome of these tests.

All the best,

-- Jim
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Avatar universal
I guess the results didn't come in today. I visited my GI today and asked him if i'm HCV positive should I "also" contact a hepatologist and he told me no and that he handles hcv himself. I'm not sure if he is just saying that for the extra money or not but either way I'm going to see a hepatologist.

Hopefully my tests will be in tomorrow - the GI ordered another rna-pcr, genotype, enzyme levels, and a set of other blood tests (I swear they filled like 10 vials). He wants to see me in 3-4 weeks.

I'll update you when I get my tests back (hopefully tomorrow).

I wish all of you the best,
Drew
Helpful - 0
244315 tn?1209956751
I just wanted to say that I am a 29 year old female and I did not reject my fiance (at the time) when I found out about it so I don't think all women would. (We got married after we found out actually.) I think it depends on the woman. If she really cares about you then she would be supportive and stick around. I think your girlfriend is just uneducated about it and if she knew more about it she would feel better. My advice would be to tell the a girl early on in the relationship about it. I mean I wouldn't make that the pick-up line, but you need to let the person know so it doesn't come as a complete shock after 6 months of dating, etc. You will be a pro if you keep reading about the disease and learn as much as you can. Then you can educate the girls you date. It's basically the same thing Trish said. I think she's totally right. I am just saying from a woman's prospective who is married to a man who has it.
You are lucky you found out about this now. Most people don't know they have it until 20 years go by. In the meantime they don't watch their health to protect their liver. You know you have to now, and you will be all right. You're plenty young enough.
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Avatar universal
Just so you're clear .... her biting your skin isn't a risk persay...unless she has some kind of open sore for your blood to go in.  Just had to say that.  She should get tested anyway just so that YOU know she's clear and there are no question marks.  I did decide early on that I would never hold it against anyone who decided that being with me was just too much risk for them...everybody gets to decide what they risk and what they don't and even if it's out of ignorance...it's still their life and no loss to you.  Like you said.. no support happenin' there.  I have, however, remained friends with some of the guys I was dating that made that decision.  Good friends. We got along well, it just wasn't something they could handle.  Saved me from having to tell the one guy that there were some things about HIM I wasn't up for...sometimes it works out. :)

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Avatar universal
Trish, did it occur to you that it isn't the Hep C that is scaring the men away, but your explanation. LOL. Once women start talking "drinking my blood", I generally make excuses and head for the door :) Angela Jolie, perhaps would be the exception :)
--------------------------------------------------------------------------------------------------------------------

Jim, Jim, Jim....my picture is posted right on my profile...I'm the spitting image of Angelina Jolie!!  Come to think of it...so are a number of other women here. ;->

Actually though Jim...since I came up with that, I've told two men.  Seems I pick ones that like a challenge as both have stuck around.  In fact...the one told me that it was nice to know that he could bite me without problems and proceeded to tell me that for MY safety I should know that he has been vaccinated for rabies and he's good for 10 years...delightful response!!  Sometimes it works out, Jim. ;->  As it is....I'm off the market by choice til done tx so it's not currently an issue...and hopefully that will become a permanent thing.
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Avatar universal
Yea, we'll that's another reason why that woman needs to get tested asap as well. Before I knew I was potentially infected she had bitten my skin (not sure if she ever broke the skin) but yea.. I think she was a vampire. It was whenever she drank she would get "bite crazy" ... I must have been bitten at least 60 times.

And no, this was NOT during sex either... lol
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Avatar universal
I'm not sure why they didn't either. What's even more messed up is that my blood tests came back in early January that showed positive hepatitis C. The doctor never even called me and told me this! In fact, I actually went into the doctor to get a refill on my anxiety meds when the doctor came in the room and said... "hey, by the way - we were just checking out your charts and you tested positive for hep C about a month ago"... They couldn't explain to my why they didn't call me immediately - but what if I never went to get a refill on my meds? What if I would have went back next year? That's just ridiculous IMO.

This medical center is supposed to be known for their "good reputation" too. It's just messed...
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Avatar universal
Drew,

Actually wondering why they didn't test you earlier for Hepatitis and Viral Load when your enzymes were high. Personally, given the scenario you describe -- and regardless if your viral load test is UND (undetecible) or not -- the prudent thing might be to gather up all your test reports -- blood, ultrasounds, etc -- and make an appointment with a liver specialist (hepatoloigst). Even if UND the possiblity exists that you are still in the acute stage and a liver specialist would be the one to both assist you there, or if not, explore more why your enzymes were elevated.

Trish said: "I've taken to explaining it like this...I tell them... "if you were a vampire and bit my neck and drank my blood, with the exception of open sores in your mouth, you would not be at risk.  However, if you wanted to be blood brothers and you pricked your finger and I mine and we put the wounds together such that my blood entered into your bloodstream, that WOULD be a risk."  

Trish, did it occur to you that it isn't the Hep C that is scaring the men away, but your explanation. LOL. Once women start talking "drinking my blood", I generally make excuses and head for the door :) Angela Jolie, perhaps would be the exception :)

-- Jim
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Avatar universal
Thanks for your long and informative response Trish77,

Yea, it's just something that she will not believe. She's a severe hypochondriac and don't even believe what doctors or information sites would tell you. She thinks you can contract it from sneezing and coughing (lol). I have pretty much removed myself from that situation as of now only because she keeps trying to tell me that she thinks if I have it - I am going to have a harsh life and die early... not much support there (hehe). She said she seen her uncle die of Hep C awhile ago so she thinks of it as the worst of the worst thing you could possibly have.

I've also informed my daughters mother... she's getting tested as well.

I live relatively near a lot of urban areas so hopefully I can locate some local support groups.
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Avatar universal
BTW, thanks for all of your posts/responses Jim! I appreciate it very much,

-Drew
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Avatar universal
Hi Drew,

I can relate to a number of things you've said.  

I can understand the massive swirl of questions you have going around in your head right now and I'm really glad you're here.  It's a tough thing to be told and there is alot to learn.  This is a good place to be for that.

Okay...as Jim said, first things first.  You need to get your test results so that you're dealing with knowns rather than unknowns.  Find out your genotype and your viral load and from the sounds of it, that's what the doctor is already doing.  Post back.  Having said that, what that will tell you is how LONG you will need to treat for if you decide to go ahead.  

The other thing.. is that, apparently, it's not unheard of to get a false positive on an HCV test.  If you've only had one, sounds like you're about to get a second.  I had my doctor test me twice because I had such a hard time accepting the diagnosis as it was thrown in with a bunch of other ones.  Bless him, he agreed. Then my GI did one and well, there was the trifecta.  So....again.....wait to see how your latest blood test turns out all around.

Once you have your blood test back.. if it's positive..then you go from there.  From there, I'd be wanting a biopsy.  A biopsy would tell you how much liver damage, if any, you have. There isn't any other determinate that's as accurate for that as a biopsy, not liver enzyme levels, not viral load, not genotype, not anything.  I suspect yours would be very low but there's no way of knowing.  A biopsy might sound like a big deal bit it's really a simple nearly painless procedure and the worst part of a biopsy tends to be lying on your side for four hours after it's done.  The actual procedure takes about 10 minutes.  I wasn't sure if I wanted to include this, however, if you're seeing the doc about the results of your blood test and if things end up positive, etc...then you can ask for the biopsy if that's what makes sense to you.

Then....once you know what your genotype is that will tell you how long you need to treat IF you are positive ... and once you know the level of your liver damage...the decision will be WHEN you treat.  That is a VERY individual thing.  Treatment currently is either 24 weeks or 48 weeks depending on genotype.  Big decisionmaking process goes into that as you have to figure out when you can fit that into your life.  I don't want to overwhelm you with all that..so I'm going to stop now and take that a step at a time once you know for sure what your actual status is.

As for your other questions....

Your relationship.  The hardest part of having HCV for me has been having to tell the men I date at a given point (before sex and after dating has reached the place that it's looking like it might go there).  The problem I encounter is the extreme lack of knowledge about HCV and the general misconception that this is a sexually transmitted disease and is the result of some kind of bad or immoral living on your part.  Not fun.  Your girlfriend needs some information.  And that might not be enough.  One of the best sites I've ever come across to explain the sexual aspect of this is the Hepatitis Australia website. They go into what sorts of sexual activity can be a risk and they explain it really well.

I have to admit...one of my driving factors for treating is that I'm single and it's not been a picnic with the various responses I've gotten from men in this regard.  I've had some very pleasant responses...but those are much fewer than the negative ones.  I'm not going to sugar coat that for you.  At the same time... still..take this a step at a time, okay??

As for how to explain it...I've taken to explaining it like this...I tell them... "if you were a vampire and bit my neck and drank my blood, with the exception of open sores in your mouth, you would not be at risk.  However, if you wanted to be blood brothers and you pricked your finger and I mine and we put the wounds together such that my blood entered into your bloodstream, that WOULD be a risk."   Maybe too simplistic, maybe some would say inaccurate but I don't think so (I'll wait to see if I get arrows shot at me for that one) but it's working for me to explain the method of transmission in a quick and understandable way.

As for getting through this without much family support.  I hear you there too.  I don't have a mom, not since I was five and I didn't grow up with my dad..I know him but we've had a difficult relationship over the years so.. while he's actually been pretty good, it's not totally comfortable to be turning to him for support. I have a sister I'm estranged from and who doesn't know I have this and my brother is a sweetheart but a real simpleton and he's more harm than good, so I don't talk to him much about this.  

What I've learned is that people will offer support and they mean well at the time even perhaps...but they don't necessarily come through.  So I now look at any support from others as bonus.  I do have those people that I'm reasonably sure I can count on but even them.. if I ask, I don't expect.  I just take what gets sent back my way.  You will have to get yourself through this first and foremost.  And you can.  Having said THAT....what Jim said is true. While you need to get yourself through this, the BEST and most valuable support will come from others who also have this.  And for that reason, I'm very very glad that you found this place.  If it comes to that, there might be a support group in your area too.  I found one in my area, small little group.. but SO good to be with people who understand what each other is going through.  You'll surprise yourself at what you're able to do.  Those three little girls of yours will be incredible motivation.

I hope I haven't overwhelmed you here.  You've asked alot of questions and I figure the information will settle you down.  I hope so.

Take care...and keep posting.

Trish



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Avatar universal
I'm not sure of the exact numbers but my ALT levels (I believe) were in the 300 range in November. In mid December I had another test and the ALT levels dropped to around 100 (i'm not sure of the exact numbers - just the general range)... I just called the office - the nurse said she may call back today and tell me exact numbers.

The doctors ran the test because I simply couldn't eat much. I just didn't have the urge at all and it worried me because I was dropping weight. I thought it was all stress related but blood tests showed otherwise. I had no pain but even if I tried to drink alcohol it would make me nauseated. This only occurred for about 3 weeks and then my hunger came back (with the exception of the last week in December).
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Avatar universal
Around 20% of men clear the virus naturally and around 40% of women -- and the fact tht your enzymes were more elevated before doesn't mean you couldn't be part of the 20%.  BTW exactly how high were your enzymes in November? I'm asking because it's possible you were in the acute stage then -- and still are -- which is often without symptons. Was there a reason why your doctor didn't run the tests then?

-- Jim
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Avatar universal
Yea, I'm not 100% sure if my doctor ordered the Genotype test or not but their testing me for Viral load for sure and i'll get the results tommorow.

My initial test came back positive but my doctor said their wasn't enough blood to test it further to make sure it wasn't a false positive. He thinks I probably do have have it because my liver enzymes were pretty elevated back in November and are still above normal range. I was drinking pretty moderately (only beer though) but he told me their basically is no possible way that the alcohol caused such high liver enzymes.

So of course I could be one of those people who have the natural antibodies but it's hard to believe that because my liver enzymes were high at the same time.

I'm really nervous and have a few other q's about that test tomorrow. I'm pretty sure that he mentioned something about the Genotype being tested as well (but not 100% sure).

What are the chances that I just have the antibodies and my viral load comes back as undetected? I don't see such a high chance simply because of my high liver enzymes.

Can they test how long I may have had the virus? This would help me better recognize where I may have been exposed to this. I was hospitalized back in 2005 for encephalitis and had several IV's jammed in my arm in the hospital during that period. The encephalitis was caused by an unknown virus that attacked my brain (caused lesions, etc.) - The hospital I was at was terrible .. and believe they may have been unsanitary with all of those IV's and such. I was diagnosed with MS and then meningitis at first but after 2 weeks they switched their story and simply said an unknown virus attacked my brain and caused a thing called Acute Disseminated Encephalomyelitis (recovered about 95% from it.. just small memory problems and made me have blurred vision). But I had about 30 needles poked in my arm during my stay there. They tested me for HIV and I thought they may have even tested me for hepatitis (not 100% sure) but I'm going to check my medical records.

Thanks for all of your support and answers.
I wish the best for all of you,
-Drew
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