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Ultra low risk and yet positive antibody tests. How??

Hi all,


Firstly, apologies for how long this is.

Sadly I was a victim of sexual assault in Sept 2018 which led to me having to have a full screening of tests as a precaution at a sexual health clinic and to also put my mind at rest as my mind had gone into overdrive. 3 days later, I had a phone call to say that my Hep c antibody test had come back positive.

The clinician explained it could be a false positive and that I needed a second test (didn't explain which test) but did explain it was unlikely the infection would have come from the assault as test was taken 2 days after the assault and infection period is usually longer.
I returned to a different (more local) sexual health clinic and advised them I was there for another hep c test and another set of swabs etc due to it now being 2 weeks after the assault. All was clear but the hep c antibody test once again came back positive and stated I needed further testing.

I asked the clinician how this was possible due to never using IV drugs (or any drugs for that matter), I've always been in a same sex (female) relationship, yes I have worked for the ambulance service but never had a needlestick injury.
The only thing I could think of was that I received IV treatment in Egypt whilst on holiday due to dehydration.
I had a 10-15 minute run of saline.
I asked what should I do now etc as I had never expected this. He explained that he wasn't a specialist in Hep C as not a usual screening test for sexual health but he would contact his colleague who was more knowledgeable.

He later contacted me and said he had spoken to his colleague and that the antibody test is extremely sensitive so considering my background, it was highly unlikely to be a true positive and told me to leave it there and that he was sorry they had worried me.

After a year or so, I started to think more about the Hep C tests and discovered I should have had a Hep C RNA/PCR test to confirm if I had the virus or not. I requested a doctor to contact me from my local GP surgery.

The doctor contacted me to tell me once again, I was extremely low risk and they would do a liver function test to put my mind at rest.... If all okay - move on with your life!

All was fine with my liver function. I moved on until recently when I was concerned about some yellowish appearance in my eyes.

I've since seen a doctor who explained they will need to re-test me for antibodies before referring me for further tests, as the tests I had at the sexual health clinic don't show up on their system.


I am absolutely terrified right now as the Hep C virus is something I never thought I would have to ever think about.

And what I forgot to add is that I have pretty bad OCD so I watch everything like a hawk. I was diagnosed with OCD in 2001 (15 years old) , so since then, I couldn't have been safer in my OCD bubble.
Apart from the IV treatment in Egypt which all looked like single use equipment from what I can remember, I literally have absolutely no clue how I would have been exposed to the virus.

I can't help but think I've been fobbed off by some professionals because they've taken one look at the OCD history and figured I'm just 'over thinking' once again.

I've also been in touch with the hepatitis c helpline UK, they were very helpful but couldn't believe that I've been left to just accept it's a false positive with no proven results.

So Monday morning I am being tested at my doctor surgery for the antibody test, which no doubt will be positive again and then wait for a referral to have further testing elsewhere (will probably take forever due to Covid-19 outbreak)

My questions are:

Has anyone else experienced so much fuss and confusion with this virus?

How likely is a false positive twice?

Why is it so difficult to get my GP to refer me for an RNA test?

Has anyone else been in this position of having absolutely no clue where this has come from?

My OCD head has always, in my mind, kept me safe and I've always assured myself it's pretty tricky to get BBV's with the lifestyle I have. Now this has happened, I fear my OCD will go into overdrive as I was extremely cautious and yet  I still managed to potentially catch this.

Some reassurance that everything will be okay would be fab right now. My family and partner keep saying "I'm pretty sure you haven't got it." but I know that science doesn't lie often and they're also probably going down the 'you're over thinking' route.

Feeling very scared right now.

Any info would be appreciated.

Many thanks,

K

Xx
8 Responses
683231 tn?1467323017
You will likely test positive for hep c antibodies for the rest of your life. Whether your positive antibody test is a result of actual infection, a previously resolved on its own infection, or some other benign factor in your blood causing the positive antibody result. About 25% of people beat hep c on their own any may not even know they were infected. There is a percentage of patients who aren’t sure how they contracted hep c even those who test positive for the virus.

The standard testing protocol is to wait 12 weeks after a possible exposure and have the hep c antibody test, if the antibody test is positive next thing would be to automatically have a blood draw for the HCV RNA by PCR that tests for the actual virus in the blood which will confirm current actual infection or that no infection exists.

General practitioners may not be totally up to speed on hep c testing protocols.

Also, I’ve heard that often only one blood draw is required. If the sample tests positive for hep c antibodies the remaining sample is then tested for the hep c virus.

I don’t see any dates for those tests you’ve had in the past. I don’t recall exactly but I believe there was no HCV RNA testing until the maybe mid 90’s or possible early 2000’s. Back when my hep c was diagnosed in 1990 it was only in the basis of a positive hep c antibody and elevated liver enzyme tests.

Bear in mind however, that the meds approved since 2014 are very effective at treating hep c. Treatments are much better tolerated than the previous treatments which I underwent in the 90’s with no success. The new treatments are also very effective at curing hep c in about 98% or better for those who are relatively recently infected, who have not previously treated, and have less liver damage.

In my case, I was infected for 37 years before I was finally successfully cured of hep c. Unfortunately, I was diagnosed with liver cirrhosis after being infected for 30 years.

So if someone like me, having undergone 4 previous treatments, having serious liver disease both of which put me in the category of most difficult to treat, with all that I was able to be cured.

Bottom line, you will know soon if you are currently infected or only have antibodies. If you are currently infected you can take one of the new meds that will very likely cure your hep c. Treatment can be as simple as one pill a day for 12 or possibly as few as 8 weeks and you will be able to put this in the rear view mirror.

So either you don’t have hep c at all and just antibodies or if you are currently infected with hep c you will be able to treat and cure your hep c. But either way you don’t have anything to worry about.

Best of luck
683231 tn?1467323017
Here is an article about false positives

“ Why Hepatitis C Tests May Give False Results

While generally accurate, the standard hepatitis C test is still subject to false negatives and false positives.

In the vast majority of cases, the result of the hepatitis C virus (HCV) test is definitive, accurately stating whether an individual has contracted the virus that can cause serious liver damage over time. However, in more rare cases false positive results occur—when someone tests positive but is not actually infected. Then there are false negatives, in which someone tests negative but actually is carrying hep C. In the event that either scenario applies to you, here is some information to help explain each phenomenon.

First a bit about the two main kinds of hep C tests and how they work. The initial test that is typically used is called an enzyme-linked immunosorbent assay, or ELISA, screen. It looks for the antibodies to hep C that the immune system develops in response to an infection. Second, there is a hep C RNA test, which detects evidence of the actual virus in the bloodstream. The RNA test is more expensive to conduct, so for general screening purposes it is typically only used as a confirmatory test: If an ELISA tests positive, an RNA test is conducted to either confirm or deny the actual presence of an infection.

Natural Clearance:

Approximately one in four people who contract hep C will clear the virus on their own.  When tests are taken after this process is complete, the ELISA will test positive while the RNA test will come up negative.  These contradictory results happen because the antibodies to hep C remain in the body even though the virus itself is gone. Research suggests that someone who spontaneously clears the virus has no greater risk of liver disease or death than someone who never had the virus.  (Hep C raises the risk of both outcomes.)  It is highly unlikely that someone who has cleared the virus will have the capacity to infect others with the virus after doing so.  Spontaneous clearance does not mean someone is immune to reinfection with hep C.

It is very difficult to determine whether someone has spontaneously cleared the virus or is testing false positive for another reason.  

False Positives:

A false positive occurs when the ELISA test comes up positive for hep C antibodies, but the person taking the test was never exposed to hep C virus, which leads the RNA test to read as negative.  

The problem is that antibodies that the immune system has produced to combat infections other than hep C can be what’s known as “cross-reactive”: The ELISA winds up picking up on these antibodies’ presence and incorrectly coming up positive. Research has shown, for example, that people are much more likely to test false positive if they’re living in areas of Africa where exposure to infectious diseases such as worms is more common. “There are a myriad of things than can infect you, particularly in areas where you don’t have a lot of sanitation and clean water,” says Oliver Laeyendecker, PhD, an infectious disease researcher at the National Institute of Allergy and Infectious Diseases.

Those who test false positive, regardless of the reason, will likely continue to do so for the duration of their lives. So in the event of future hep C exposure, an RNA test will be needed to accurately diagnose an infection. Major risk factors for contracting hep C include: injection drug use, including steroids; the sharing of needles, syringes or other injection materials; needlestick injuries in a health care setting; tattoos or piercings performed with non-sterilized equipment; and condomless sex among HIV-positive men who have sex with men (MSM).

There is also always the rare possibility of lab error leading to a false positive or a false negative test result.

False Negatives:

Just as with testing for HIV, a false negative occurs during what’s known as the “window period”—the time after infection but before the immune system has developed antibodies. For hep C this is about four to six weeks. During this period, because there is no antibody to detect, the ELISA will come up negative. However, an RNA test will identify the presence of the virus, especially considering how highly sensitive that test is and how quickly the virus multiplies to high levels in the body.

Those with suppressed immune systems, including those with HIV, may be more likely to test false negative because of their diminished capacity for developing antibodies.

The crux of a false negative scenario is that in most cases only an ELISA test will be conducted, thus missing the chance to diagnose the virus accurately. Considering that medical guidelines recommend only a one-time test for many demographics, this could be the difference between identifying the virus early and waiting until decades have passed and liver disease prompts another test.

So if you have had any potential recent exposure to hep C, it is a good idea to get retested for hep C with an ELISA test after three months have passed or to obtain an RNA screen. Hep C risk factors are listed in bold above.

Another test that may indicate a new, also known as acute, infection with hep C is the alanine aminotransferase, or ALT, liver test. An irregular result, which is likely to occur before the development of hep C antibodies, may indicate an infection with the virus. This is hardly a foolproof method of detection, however, since ALTs can elevate for all sorts of reasons and because perhaps more than half of those with hep C will have a normal read.”
1 Comments
Thank you so much for your response.

I found the information you've included very helpful to read.

I spent some time looking through other posts last night so this kind of helped me to sleep a little last night.

It's just very frustrating as this whole scenario has been going on since I was first tested in October 2018. I feel like  I've done everything I've been advised to do but it seems pretty much all of the medical prractioners I have been seen by have very little awareness of the screening procedures.
It amazes me that in 2020, medical professionals still aren't aware and giving potential false information and advice.

I think the fact that I've always been overly careful and scared of anythinf infectious, due to my OCD feeling of being 'contaminated' with anything as such (the way my head sees the world), that for this to have happened has absolutely baffled me. Just makes me terrified as I've heard Hep C isn't easy to catch but I really do go out of my way to keep safe. I have a relatively  normal, boring life..... e.g Go to work (Teacher), come home, walk my dogs, go to bed!

I do have 2 more question if that's okay.

I'm aware on forms such as dental work or even sole beauty treatments, people are asked about BBV's.

If you are cured of the Hep C virus, do you still have to declare you've had it?

How did you find telling people about your hep c infection? I'm lucky that my partner is very understanding and has been very supportive throughout the whole process, however, I worry about potentially having to tell my employer if time is needed out for treatment, hospital appointments etc They require a copy of appointments so I'm guessing they would know all. Sadly, it feels like there's still such a stigma attached.

Thanks again for the information you've provided and great news that you were cured after such a long process of 4 different treatments.

The waiting for the unknown really is the worst thing. Especially at a time like this as I know a lot of the normal services have been shut down due to Covid-19. Even just getting an appointment yesterday to SEE a doctor and get bloods arranged took 3 phone calls and many tears from worrying throughout the day. Felt like I'd been hit by a bus several times by the evening.





683231 tn?1467323017
Assuming you have hep c and once you are cured you no longer have hep c do nothing needed to tell your dentist etc. However one would hope health care professionals would be concerned other that to take appropriate precautions if you were currently infected. In fact that is what the should be doing with all patients all the time anyway, taking appropriate care to avoid transmission of blood borne viruses.

Are you in the US? We have privacy laws here you do NOT ever have to inform your employer why you are seeing a doctor. Only that you have an appointment.

Assuming you need treatment you don’t necessarily need to see your doctor at all. Possibly a first appointment. But other than that just getting periodic blood tests from a lab somewhere near you and have those results sent to your doctor to track your treatment progress.

I needed almost no time away from work during this last treatment. During one of the older treatments I got pretty run down so I took 2 weeks off on family medical leave. I was getting one self administered injection of interferon along with a drug called ti I iron which has a side effect of making many people become very anemic. Some of my friends noticed I looked very pale because my hemoglobin was so very low.

The old interferon treatments were 24 weeks with self administered shots once weekly along with other pills. Basically you felt very run down for six months and the odds of success were around 35%

My friends knew I had hep c. I worked as a machinist which is a job where sometimes you can get injured and bleed a lot do I wanted my friends to be safe if I should get injured on the job. I think if you approach with the feeling you will be stigmatized that is what may happen. I never really worried about it and never felt stigmatized. It’s just a health problem like many others.Would you feel stigmatized if you had the measles the flu or cancer? Truthfully even people with cancer find friends pulling away from them because they are sick. I think it’s just a human nature thing.  

And yes hep c is not easily contracted. For one it is blood borne. Hep c infected blood must enter the blood stream of an uninfected person. Also only about 4 percent of the population  in the US even have hep c so the likelihood of encountering someone with hep c is relatively low.
1 Comments
Once again, thank you for your response.

I live in the UK so I'm not entirely sure where I stand with privacy laws. With previous medical appointments, I've had to provide hospital letters attached as proof of appointment. As my mum keeps reminding me, it's a case of crossing that bridge if and when I get to it.

Sounds like treatment has certainly come very far in comparison to what options used to be available and great to hear the success rate has increased massively.

Yes, my understanding has always been that most BBV's are actually pretty tricky to get....... which makes it even harder to understand where it came from. I've been driving myself insane just trying to work out how (if I am hep c positive)
My friends have always made a joke of me with how cautious I am about anything - I'm the person that doesn't use public toilets because of the fear of germs and takes their own cutlery to work!

I guess all I can do is just sit and wait and pray for the best outcome and if that doesn't happen, get the treatment needed as soon as possible.

Thanks again :)
683231 tn?1467323017
Yeah it’s hard for anyone dealing with an unexpected possible diagnosis of something that sounds very scary. From your last sentence it sounds like your coming to terms with your present situation. One way or the other this will be behind you soon. Things are lightyears ahead of what you would be looking at if you were diagnosed with hep c just 6 years ago.

Take a breath this too shall pass. For perspective what were you worried about a year ago? I bet you can’t remember and even if you can I’m willing to bet your worst fears were not realized.

“Worry does not empty tomorrow of its sorrow, it empties today of its strength.“
683231 tn?1467323017
Found this about UK medical privacy laws equivalent to USA HIPPA laws

“ HIPAA is a US regulation it stands for Health Insurance Portability and Accountability Act (HIPAA). In the UK and the NHS we call it the Data protection act. In data access regulation we often talk about operating on a 'need to know' basis.

https://sdr.co.uk/what-is-hipaa-compliance/
683231 tn?1467323017
Also

“ uk's top five things an employee should know about their health and the workplace: You are not duty-bound to reveal an illness or health issue to your employer. ... If your contract of employment specifically says you must tell your employer about any condition that affects your ability to do the job, you must tell them.”

https://www.mirror.co.uk/money/jobs/you-tell-your-boss-youre-6666746
9 Comments
Thank you so much for looking into this for me and the quote about worrying really hit me in a positive way so thanks again.

I've had a call from my doctor surgery today. They decided to test me for anaemia and do a liver function test again alongside the antibody test. I'm guessing the anaemia was done because of this slight yellowing I have in the corners of my eyes.

Doctor felt it could be down to fatigue and the increased level of screen work I'm doing whilst trying to teach from home. I teach special education so it's been pretty tricky to prepare lessons for home learning without actually beimg able to be with the students.

Anaemia and liver function test has come back already. All within normal parameters so no further action required regarding those. They explained the antibody test will take longer as it needs to go to a viralogist. We have a bank holiday here on Friday so, looks like I may not get antibody result until Monday at least. I'm expecting it to be positive. Would be miraculous to have 2 positive antibody tests 18 months ago and then nothing. Not possible.

I'm hoping the doctor will explain the tests and the levels a little more to me though, especially with regards to the liver function test and the antibodies. Regardless, I'll need the 2nd test but I'm just curious. We're often just given generic answers and I'm usually quite happy with that. This whole scenario has made me realise that I should be asking more and requesting further investigation if I can easily prove that it's required.

Thanks again for your responses. Comforting to speak to someone who fully understands. My mum and my partner are great but they often tell me what I want to hear and they're not being realistic about it.

I'm more aware than anyone that the fact that this is happening is insane considering my extremely predictable and boring 'safe' life with a good health background as of yet but fact is, science is saying something has happened somehow so we need a definitive answer and that's that xx
Thank you again so much for your responses.

Your 'worry' quote particularly gave me a sense of positivity to an extent.

I had a call from my doctor surgery today, as I had my blood taken yesterday morning. They also tested me for anaemia and did a liver function test following my concern for the yellowing in the corners of my eyes. Doctor felt it could be fatigue or due to increase of screen time from the norm. I'm a teacher for special education, so preparing activities and lessons for my pupils has been pretty tricky knowing I can't be there to help them.

So bloods came back normal for anaemia and liver function. Hep C antibody test won't be back for a few days as obviously needs to be sent to a viralogist. We also have a bank holiday here on Friday, so it's unlikely I'll hear back until Monday. Expecting this to be positive as the other 2 came back positive 17 months ago, so a negative result would be unheard of.

I would just be interested to discuss my results properly with my doctor. I've always just listened to the generic response e.g. Liver function test was all normal. Well what does that actually mean? What did they test my liver for? Did they give it a full check or just check a few things? And as for antibodies, I've heard there's different levels. Not sure how true this is.
I know on my last positive results I was told the levels were low but still detected. Does this even mean anything?
Regardless, I know I need the second test, I just think it's important tant to know a little more about my own health than just generic understanding, especially at a time like this. It's strange how when we buy something or have an interest in a new hobby, we learn everything about it. But so many of us barely know anything about the most impotent thing we have - our bodies.  I know it's impossible to know everything, but so many of us know so little.

Thanks again for your responses as I've said. It's nice talking to someone who has experienced this and understands the processes etc.

My partner and mum have both been fab. They're just not overly realistic. They say what I want to hear and I myself know it's absolutely madness that I'm even experiencing this due to always being so careful with EVERYTHING. But at the end of the day, the science is saying something has happened, so it needs investigating and that's that... X


Sorry it failed to post once.

I typed it all out again and it's now appeared!
The name liver function test is sort of a misnomer really they are looking at liver enzymes scores. Liver enzymes (ALT or AST) are elevated when higher than normal levels are being released into the blood stream. This occurs when the liver is repairing itself from injury. So for someone with hep c for example the liver is under constant attack fro the virus and in a constant state of trying to repair itself.

Hep c is not the only cause of elevated ALT and AST. Also while elevated liver enzymes are common in hep c not everyone infected with hep c will have elevated liver enzymes.

Yellowing of the whites of the eyes (also skin) is called jaundice it is caused by elevated bilirubin. Most people with hep c have few to no symptoms. For myself even with having liver cirrhosis I’ve never experienced jaundice.

Here is something I found about the causes for elevated liver enzymes from the Mayo Clinic

“ Many diseases and conditions can contribute to elevated liver enzymes. Your doctor determines the cause by reviewing your medications, your signs and symptoms and, in some cases, other tests and procedures.

More common causes of elevated liver enzymes include:

Over-the-counter pain medications, particularly acetaminophen (Tylenol, others)
Certain prescription medications, including statin drugs used to control cholesterol
Drinking alcohol
Heart failure
Hepatitis A
Hepatitis B
Hepatitis C
Nonalcoholic fatty liver disease
Obesity
Other possible causes of elevated liver enzymes include:
Alcoholic hepatitis (severe liver inflammation caused by excessive alcohol consumption)
Autoimmune hepatitis (liver inflammation caused by an autoimmune disorder)
Celiac disease (small intestine damage caused by gluten)
Cytomegalovirus (CMV) infection
Epstein-Barr virus
Hemochromatosis (too much iron stored in your body)
Liver cancer
Mononucleosis
Polymyositis (inflammatory disease that causes muscle weakness)
Sepsis (an overwhelming bloodstream infection that uses up neutrophils faster than they can be produced)
Thyroid disorders
Toxic hepatitis (liver inflammation caused by drugs or toxins)
Wilson's disease (too much copper stored in your body)“
So result for antibodies has come back but not very clearly once again.

Same situation as before when the words 'indeterminate result' has been used.

Past 2 results from 2018 I was also told were positive but were labelled as 'indeterminate result'. I guess this is why they've never given me an RNA test as they've judged me as being low risk and therefore asked me to carry on with life as normal.

Anybody know much about
indeterminate results? Not much info available online, just that it could be either way.

Doctor was unable to explain results to me today but has booked me in for a telephone conversation at 8am this Friday.

More waiting.... But a step closer to an answer!
It’s very likely your antibody results will remain indeterminate probably for the rest of your life. The only way to be certain one way or the other is have the HCV RNA by PCR test. If that is negative you do not have hep c no matter what the antibody test says.

If your liver enzymes are normal it does make it less likely you are infected with hep c.  
Do you have any idea why I will get that result for the rest of my life? Indeterminate seems such a strange outcome, and I could maybe understand for 1 test and maybe second test giving either positive or negetive but to always never give  either a positive or negetive result of antibodies just seems really bizarre!

Going to push for the RNA test when I speak to my doctor Friday morning. Only way of knowing for sure.

Sorry to keep pestering you. You just seem very knowledgeable and helpful!

Thanks as always! X
Well for those of us who were once infected with hep c we will Forever test positive for hep c antibodies. In your case I can’t be certain but I’m assuming what ever is triggering a positive antibody test will likely also never change. This is just my laypersons guess just my gut feeling.

So for someone like myself since my antibody test will always be positive the only way I can know if I have a new hep c infection would be to have the HCV RNA by PCR test
Fun and games with the doctor once again.

So doctor called me at 8am, discussed that my result was indeterminate (which I knew) and said it stated that there was no evidence that the virus was present. I asked how she was able to identify that from the antibody test. She read out again what the results said and then explained she doesn't feel there's a need to take this any further.

I explained that indeterminate has now been the result for the past 3 antibody tests (even though they described it as a false positive.... Not helpful but I do remember seeing indeterminate on the paperwork when I went in for results and advised another test)

She said I've probably been exposed in the past but there is no evidence to say it is still in my system.

I explained that the NHS websites explains that if there are any abnormalities with results, the RNA test is the next step.

I also continued to say that this has now been going on since September/October 2018 and needs to be put behind me for my own mental health! I explained I need the test, if it's negetive, I can move on, if it is positive, I get treatment and then I can move on.

Miraculously, the doctor then finds that the surgery CAN offer the RNA PCR test, even though she said a couple of weeks ago that they didn't do it there and I had to be referred to the local hospital for that. The doctor I spoke to in January  told me an RNA test didn't even exist!! I have put a complaint in about that and they have listened to the phone call and confirmed he gave inaccurate information.

So I'm now finally booked in for the RNA test on Monday morning.

What a journey!!! I've spoken to the Hep C UK helpline and explained the effort it has taken to get what I should have been given almost 2 years ago.
They've now provided me with information to forward to my surgery as it seems as though they really don't know a great deal about the screening process and it's got me thinking about how many people don't persue it like I have and will potentially end up pretty unwell in time if they weren't tested properly and are now living with the virus. I think it's really quite scary!

They need to remember that I was never concerned about Hep C, they were the ones that brought it to my attention.

So I guess week after next will be results time and then I can move forward in whichever direction xx
683231 tn?1467323017
Well your doctor is correct in that it is highly likely you don’t have hep c but I can certainly  understand a normal desire to make certain you are not infected given your varying results. Glad to hear your finally getting the HCV RNA by PCR testing. My results usually took about a week to 10 days to come back due to the nature of the lab procedure. But anyway you should know for certain your status soon. Best of luck
1 Comments
Result is in. Test was negative!

Obviously they can't determine whether or not I've had the virus and cured myself, however, good news that I don't have the virus present in my body.

Thank you again for your help/info during this really tricky time.
683231 tn?1467323017
So happy to see you finally got a definitive answer and the answer was good news. Thanks for the update!

Congrats and have a great life ;-)
1 Comments
Thank you so much!

A huge relief just to get an answer :)

Wishing you all the best for the future. You've been amazingly helpful through this journey.

Take care! x
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