I have this genetic disorder called G6PD [0]. It's pretty common, with about 5% of human beings having it. Most people who have it go through life without ever finding out they have it, because it has almost no symptoms.
One of the symptoms though is that eating fava beans can kill you. I basically ate a bunch of these beans and soon went into shock. I was rushed to the hospital but the doctors couldn't make an accurate diagnoses. It was kinda like an episode of House, except with just regular doctors. They knew I had acute hemolysis but didn't know what was causing it. Then a nurse suggested that a blood transfusion can fight the hemolysis even without knowing the root cause; that blood transfusion saved my life. It was much later that the doctors found the G6PD; turns out my great-grandmother had it too.
That's another thing: your doctor should be informed of every major medical issue that your genetically-related family members has, since it could potentially help their diagnoses. From genetic conditions, to even common stuff like high blood pressure and diabetes.
Sorry, English isn't my first language. To clarify, I signed up for an elective cosmetic medical procedure. The doctor ordered pretty much every available lab test there is to check for any possible complications. One of the test revealed that I had elevated liver enzymes. A couple of follow-on tests later confirmed Hep C. I never went to through with the original cosmetic procedure because I'm no longer in the mood for it.
I got it from a blood transfusion when I was a child.
I got diagnosed back in 2016, and the available treatments back then wasn't great. As an alternative, my doctor signed me up for the clinical trials for the drug now known as Harvoni. I figured that it's a moonshot and didn't pay it any mind. (Having read Stephen King's Firestarter didn't help either.) I also moved to a different city for a job. Months later the drug company called and told me I qualified. The drug trial would have been free and would have cured my hep C, but alas I can't afford to quit my job and fly back to the old city for 3 months. (In hindsight I probably should have.)
Around 2018 when generic Harvoni became available from Indian manufacturers, I got serious about curing my hep C once and for all. I found a doctor that's willing to work with foreign-sourced Harvoni and ordered it online for $1300 (all out of pocket). I started the treatment under my doctor's directions and it went smoothly.
Yes, I got it from a blood transfusion when I was a child. The Hepatitis C virus wasn't identified until 1989, and blood bank wasn't wide spread until early 1990s, so anyone who received a blood transfusion before then is at risk.
>There's no ability and need to test everyone today, but this is a sign that we should move to more regular screening of higher percentages of the population.
Signs of Hepatitis C, along with most liver diseases, can be caught with the standard liver enzyme tests that's available in pretty much every lab in the developed world.
To be specific, if you see your doctor and it's been more than 6 month since your last visit, then it's standard procedure to take a blood test. Your doctor will take out a pre-printed form that's commonly called "laboratory requisition form" or "assay requisition form", fill out the patient information and tick a few boxes. If they ticked the "ALT" box, then they have ordered the necessary liver enzyme tests. Quoting Wikipedia: "Significantly elevated levels of ALT (SGPT) often suggest the existence of other medical problems such as viral hepatitis, diabetes, congestive heart failure, liver damage, bile duct problems, infectious mononucleosis, or myopathy, so ALT is commonly used as a way of screening for liver problems."[1]
Here's a Kaiser Permanente laboratory requisition form[2] with the ALT checkbox. Here's a Quebec health provider that include ALT in their general profile test #1 through #4 [3].
Testing for Hepatitis C directly is also widely available. Since it's a public health hazard, most state and national governments in the developed world has setup free testing programs. For example, I Googled "california hep c testing" and this page[4] is the third result. They offer _free_ Hepatitis C tests with the results available in 20 minutes.
I paid $1300 for a 12 weeks course of generic Harvoni from India. I paid using credit card and it arrived within a week. Normally I'm a law-abiding citizen, but as you said, if it comes down to choosing between violating intellectual property laws and death, it's an easy choice to make.
Like many of you, I'm a young and healthy guy. I haven't taken a sick day in years. Since I'm young and healthy, I didn't see the need to take an annual physical exam. Scheduling doctor's appointments is such a hassle. I'm sure many of you feel the same.
So when I was diagnosed with Hepatitis C, it came as a complete shock to me. The shock was due to two reasons:
1. I wasn't involved in any of the "high risk" activities associated with Hepatitis C, which are intravenous drug use and tattoos.
2. I regularly went to the doctor's when I was a child, so there was at least 20 blood tests done back then. None of tests caught the Hepatitis C back then.
Since Hepatitis C is a chronic condition for most people, if I didn't catch mine early, it would have been found much later in life when all of the damaged has been done. I only caught my Hepatitis C because I wanted to an elective cosmetic medical procedure. It was my own vanity, plus pure luck, that caught it.
When I was a child, I was covered under the government's and my parents' health care plans. When I entered college, I was enrolled under the mandatory student health care plan. After I entered the work force, I was covered under my employer's health care plan. All this health care was fully paid for, either through tax dollars, or my parent's contributions, or my own contributions, and I stupidly chose not to utilize it, because I was young and healthy.
If you don't want to end up like me, then please heed my advice: all of you are under-utilizing the medical services that you have already paid for. You should research what kind of screening and preventive care is included in the health care plan that you purchased and then take full advantage of them. It's better for you since you live longer. It's better for your insurance company since screening and preventive care is much cheaper than paying for treatments down the road. It's better for your government since they get to collect more tax dollars over your longer lifespan. And it's better for me since I make a living using the software and services that you guys provide.
I can stick around and do a AMA if you guys have any questions for me.
One of the symptoms though is that eating fava beans can kill you. I basically ate a bunch of these beans and soon went into shock. I was rushed to the hospital but the doctors couldn't make an accurate diagnoses. It was kinda like an episode of House, except with just regular doctors. They knew I had acute hemolysis but didn't know what was causing it. Then a nurse suggested that a blood transfusion can fight the hemolysis even without knowing the root cause; that blood transfusion saved my life. It was much later that the doctors found the G6PD; turns out my great-grandmother had it too.
That's another thing: your doctor should be informed of every major medical issue that your genetically-related family members has, since it could potentially help their diagnoses. From genetic conditions, to even common stuff like high blood pressure and diabetes.
[0] https://en.wikipedia.org/wiki/Glucose-6-phosphate_dehydrogen...