IamA Severe Hemophiliac! AMA!

Wanna play darts?

I'm awful at darts and my wife and I laughed since this was the first question.

I take pride in always knowing the wrong thing to say. Never get marital advice from me either.

It's better than "hey man, so like, if you like, get a paper cut, will you die?"

Will u? I'm serious

Hasn't happened yet.

Damn that sucks. What are some activities you can't do due to risks of bleeding, and how dangerous are bruises or gashes?

I can't do full contact sports which is interesting since my dad is a retired football coach. Certain sports that have risks like skateboarding or mountainbiking, stuff like that. I get bleeds (internal bleeding) every now and then and if/when that happens I treat it by shooting up some synthetic clotting factor and everything is usually fine by the next day. Sometimes they can be really painful. Luckily I haven't really had to worry about gashes or anything like that. I've had a few times where bleeds are so severe that I've had to go to the hospital and had a factor IV in for a few days. That's fun. Fortunately that hasn't happened in several years. I infuse once a week so I typically have enough factor in my blood to take care of any day-to-day common trauma so there's not much worry there.

Good to hear you're being optimistic. Keep it positive man.

Absolutely. I consider myself lucky compared to a lot of other hemophiliacs I've met who have a lot of joint damage due to bleeds. I live a pretty normal, active lifestyle and try not to let it keep me from doing so.

Do you feel anything different than before this? Does your blood flow through your veins differently?

I was born with hemophilia so everything feels natural to me. My blood flows through my veins the same as anyone else's, it just doesn't clot naturally.

Oooh I thought for some reason this was a result of the Hep C. Dumb question.

It's all good. I contracted Hep C because back then the factor I used to take was made from human blood and they didn't test for Hep C. A lot of hemophiliacs got hepatitis and HIV from it. There's a really good documentary called Bad Blood about the whole thing. It may still be on Netflix.

Jeez, that's horrible. I would seek a suit with whatever company didn't test human blood for diseases transmitted by human blood. It's ridiculous.

EVERY company didn't test for blood borne pathogens in the late 80s. It wasn't just one bad company, no one tested for it.

If you want to get really pissed off, watch "And the Band Played On." Many in the medical community wouldn't even awknowledge that HIV was transmitted through blood, never the less testing for it. It was considered to only affect gay men until others in the medical community popped up and said, "Well...Haitians in Florida, babies born to drug addict mothers, and hemophiliac children are also getting this..." that anyone started giving a shit about AIDS.

Totally. If you want to get pissed off, watch Bad Blood. These companies knew that they were manufacturing contaminated blood products and didn't do anything about it.

I took a class about HIV in college and we watched a ton of movies (both documentary and Hollywood style) and pretty much every single one makes you angry about the medical response.

This will sound super shitty, but I'm glad you only got hep C. I think the estimates for the 80s is that 90% of hemophiliacs got HIV and since there was basically no treatment, their outcomes were not good.

Doesn't sound shitty at all, I have the same attitude. It's super sad what happened and if I only got Hep C (I've been cured since then), I feel like I was lucky.

I did! ᕕ( ᐛ )ᕗ

Is this a current issue? I would think they are testing for Hep C and HIV nowadays.

Everything is tested and heat treated these days and the medication I've been taking for 10+ years is all synthetic so there's no risk.

How has it affected getting tattoos?

I just infuse right before I get tattooed. What's funny is that my tattoo artists tell me that I really don't bleed much at all during sessions compared to people without hemophilia. The first time I ever got tattooed I don't think I bled at all actually. Kinda freaked me and my artist out haha. I'll have some swelling for a day or two afterwards but that's typical for anyone. If it swells more than what I'd expect it to, I'll just infuse again and I'm fine. Plus I'm used to needles so I guess that might make it a little easier too.

How much does your medication cost? Without it do you think you would be dead?

Without insurance it's about $100,000 for a six week supply which is ridiculous. Luckily I have insurance, but having a pre-existing condition is a pain in the ass. Without the medication, do I think I would be dead? Probably.

"Hemophiliac" sounds like a fetish, so: what's the nastiest thing you've ever done with blood?

I don't know about nastiest, but I can think of something funny.

One time I was trying to infuse at a hospital and the needle was taken out of my arm with a tourniquet still on. This thin stream of blood just goes squirting out of my arm all over the place for a good 5 seconds, getting blood everywhere like it came from a mini super soaker. Being who I am, I laughed my ass off while the nurse looked horrified.

Also I have track marks and sometimes people assume it's from drug use. Sometimes I go with it just to see how they react.

Amazing.

I'm also the kind of person who finds my imminent demise hysterical. I always wonder what percentage of patients are like us, and to what degree we freak out (or don't freak out) hospital staff.

I just have a weird sense of humor and tend to laugh at things other people won't. Hopefully there are a lot of people like us. I joke about stuff like that constantly and even with my doctor and nurses. They don't find it very funny. But I do, so whatever.

The real question then is, do they not laugh because it's not funny to then, or because they've heard such gallows humor a hundred times before we showed up?

The last time I went to clinic for my annual checkup, the hematologist there was a hemophiliac himself. When I started joking with him, he kept rolling his eyes like he's heard it all before.

in the event you require a transfusion, does your condition affect your body's ability to accept blood? Would you require a special type or method of infusion?

Thanks for doing this btw, it's always cool to meet people with unique experiences.

I've never had to have a transfusion like that, but I don't think it would affect anything. The factor I used to take was made from human blood so I think I'd be fine accepting a normal transfusion. I'll have to ask my hematologist about it. And you're welcome!

Would you be able to donate blood? I guess not, though they could add the clotting factors (but I guess that would be too much trouble to be worth it)

Nope. I've always wanted to, but I guess my blood isn't good for anyone.

cries in corner

Show us some tattoos ?

http://m.imgur.com/l6gdKSb

The inside of my arm is done as well. I just can't find any photos and I don't feel like getting up and taking some since my wife and our puppy are asleep haha. I need to book an appointment soon and get my elbow done and finish my upper arm and get it colored.

nice! :)

Thanks! :D

Have you heard of Alex Dowsett? Pro Cyclist (Gold Medalist at 2014 at Commonwealth) he's got Hemophilia too but he takes an Injection of clotting protein Factor VIII every 48 hours (As per Wikipedia) though contact sports are still a risk apparently. Are there any clotting Factors that will be better suited for athletes in contact sports and also have you considered taking up road cycling like Alex?

Much care and concern from Singapore =]

I've never heard of him, but that's really cool! I'll look more into him. Wow, I can't imagine taking it every 48 hours. From what I've heard, Factor VIII deficiency is a lot more common. As far as the type of factor (VIII,IX), it just depends on what your body doesn't naturally produce. I guess like him you'd just have to infuse way more often to be able to be involved in contact sports. Recently my doctor told me about a new factor treatment that has a longer half-life so infusing could be less frequent than what it is currently and they want me to try it out so I'm excited about that. As far as road cycling, I've never really been much into cycling but I may try it out one day!

what sorts of things do you worry about in your day-to-day due to your condition that people might take for granted?

Simple things like playing with my dog and him accidentally hitting my hands pretty hard, accidentally running into a table because I'm clumsy as hell, tripping, etc are all common things that can give me bleeds when I'm running low on factor. I wouldn't say I worry about it though. To be honest, I don't really think of it that much. I'm used to it I guess. Last year though, someone ran a stop sign and totaled my car and it scared the shit out of me. The seatbelt caused me to have a bleed in my chest but everything ended up being fine.

so do you get really gnarly bruises?

Sometimes, yeah.

This is from my friend barely hitting me on my leg. Didn't think anything of it when it happened, but then the next day it's like "holy shit!" http://m.imgur.com/wNNRXSu

Have you had any major (or minor, if they're notable) bleeding incidents? Or, any bleeding incidents worthy of retelling?

When was 3, I had a subdural hematoma which is bleeding between the brain and skull. I underwent brain surgery and everything was a huge success. I don't remember any of it but I have this huge, gnarly scar on my head. My parents hate talking about it, but when I was older they told me it was the scariest thing they've ever gone through. Apparently the odds of me surviving were super low, but the surgery went perfectly and I was fine. It's weird to think about something like that which I don't have any memory of and a surgeon saving my life. It's almost like it happened to someone else, you know? Other than that, I've been hospitalized a couple times due to bleeds that just wouldn't stop with simple at-home treatments so they'd give me a factor I.V. over a few days. That hasn't happened in years, thankfully.

(In retrospect, I'm sorry if my question seemed repetitive or like it ignored your descript. on your AMA.)

That's actually really cool! I mean not the almost dying part, but the other stuff. It's honestly hard for me to grasp this condition, but I'm really glad you haven't had something like that happen for a few years. Always good to be able to take away something positive.

No worries! As far as the condition goes, basically my body doesn't produce the stuff in my blood to make it clot. So if you hit your arm or something and you get a bruise, that means you were bleeding internally and your body produced clotting factor to get it to stop bleeding. Same thing with getting cut and then you get a scab so it stops bleeding. My body doesn't have that stuff so I have to inject synthetically made clotting factor intravenously about once a week to keep me at a moderate level, but even then it's still really, really low compared to most people.

Hiya! Have you had any good come from your Hemophilia? Other than the ability to have a Reddit AMA, that is. I know it's an odd question, but I've found that the oddest things can have good come of them; E.G. my best friend has panic attacks, and the experience makes her really good at handling other people's stress (she's proud of it).

I've had a few opportunities to talk to kids with hemophilia and their parents and that was always rewarding. Assuring them that everything will be okay and using myself and experiences as examples. Other than that, a lot of humor and really bad jokes from my friends.

When/under what circumstances were you diagnosed? I'm picturing a little kid falling off his bike and his knee starts gushing and just.doesn't.stop.

My parents knew there was a super high chance of being a hemophiliac before I was born since my uncle had it. Right after I was born, a simple blood test was done that confirmed it.

The Hemophiliac community was horribly affected by HIV/AIDS (and also Hepatitis) in the 80's and a lot of great people died. Do you trust the blood banks now?

Since I contracted Hep C due to this, there was a long time that in the back of my mind I was hesitant about certain treatments and that underlying fear was there. Now, though, there are so many tests performed to blood products it's not really an issue anymore. Plus the factor I infuse with has no blood products in it anyway- it's all made in a lab so yeah, I trust the blood banks now. No hemophiliacs will ever forget what happened, though.

What is your opinion on gene therapy for (genetically) simple conditions such as yours? Would you agree to having your clotting factor gene repaired?

If yes: What do you think about said repairs being illegal?

I'd totally be willing to do it and I think it should be legal. As far as I know, this is already being researched as a possible cure.

Is your condition something you inherited genetically, or was it like a random mutation? If it was genetic, do you know which parent was a carrier? (I don't remember off the top of my head but I think it's X-linked. Not sure)

My mom is a carrier so I inherited it genetically from her. Her brother had Hemophila as well and sadly he died when he was 2. There weren't a lot of medical options back then. Fortunately now it's waaaay easier to live a full, active life with the condition and medical advancements have been pretty awesome in the last 20 years.

That's really fascinating, thanks for the response, and sorry about your uncle.

No problem and thank you. Also, if my wife and I have a daughter I'm pretty sure she will be a carrier so it's possible that I could potentially have a grandson with hemophilia.

If your girlfriend were a carrier, you could try for the rare female hemophiliac!

Sorry. ;)

We'll hold a blood ritual and see what happens.

It's great that there are ways to manage it now. Who knows, maybe in the future it can be cured.

That's what they're working on. What's interesting is that since a lot of hemophiliacs contracted hepatitis due to contaminated clotting factor, many of them had to get liver transplants. The proteins that produce clotting factor are produced in the liver, so, ironically, them getting hep c from hemophilia treatments and getting a new liver cured their hemophilia. Crazy.

That is nuts!

For real! Watch the documentary Bad Blood if you ever get a chance. It has interviews with people who did that and it's really interesting.

It can be cured, right now.

Give me two months of lab time and three days of OP's time, and he'll be cured.

Sadly, I'd probably become unemployment and spend some time in jail for grievous bodily harm.

PM me haha.

What country do you live in?

USA

Ever had any health insurance issues or was it always trouble free on that front?

My parents are both retired teachers so thankfully they always has good plans that I was on when I was growing up. Granted, the companies would always try to fight claims, but in the end it was actually pretty easy. As soon as I left my parents' plan, things changed. Before Obamacare, getting insurance was insanely expensive so I'd have to go on programs to help pay my premiums or have to opt to get prescriptions that my doctor didn't necessarily want but had to since it was a much cheaper option. Now with Obamacare and the legislation about pre-existing conditions, my premiums aren't nearly as high and I can't be denied. Insurance companies still hate paying it and find any reason they can not to, but it's definitely a lot better than what it was. There's still a lot to do to reform healthcare.

Are you scared of vampires?

Not really. The ones I've encountered all said that my blood tastes weird so I'm kind of unwanted in the vampire community.

Aww bro, that sucks. I don't know much about how the circulatory system works, but say if you became super dehydrated. Could you still manage to have water pumped into your veins.

I don't see why not.

Hi! Fellow bleeder here (severe, type A, 27 m) What product do you use? Im on eloctate, I average maybe one treat a month believe it or not. You prescribed any pain meds? What do you do for a living?

Right on man! I use Benefix. That's awesome that you only treat once a month. I hope one day I can get to that. Nope, no pain meds. You?

I know this question is a little "hard" so feel free to respond or not. But I always wonder, for people who have a genetical problem, how do you feel about having kids, would you try?

My wife and I plan to have kids. We just got married so we're waiting 2-3 years, but we're looking forward to being parents. If we have a daughter, we're prepared for her to be a carrier. Who knows, there could be a cure well before my possible future daughter has kids. I'm hoping it happens in my lifetime.

I hope the cure happens in this lifetime for the sake of your future children. I had fun reading your tattoos stories. How many kids are you planning to have? Living with chronic ITP and being a female, I was discouraged from having kids.

Thank you!

We want two. But who knows :)

My mother actually has an extremely low factor count and was advised not to have any kids after I was born since she bled a lot.

I'm a moderate hemophiliac. Unfortunately, I have one of my joints really fucked up for my age. God gave me the gift of playing football (soccer in the USA), so since my childhood i've been dealing with ankle issues that really affects me nowadays. Being an hemophiliac made my family refuse a proposal from a big club in my country. I turned to bodybuilding at my adolescence, which gave me strenght and joint protection, but also an elbow injury. Which sports do you practice? What do you think about omega 3 and glucosamine for joint protection?

Damn, I'm really sorry to hear that. Which club, if you don't mind me asking?

For sports, typically running or swimming mostly. Things that are low impact. I really don't know much about omega 3 and glucosamine for joint protection. I'll have to look into it and ask my doctor.

Sporting Portugal. Don't you get your ankles sore while running? Do you have any experience with weightlifting?

Oh, wow. Really sorry that didn't work out.

Sometimes, yeah, my ankles get sore. If I'm running it'll typically be like 3 minutes of fast walking followed by running for a minute or two and alternating. I have some experience with weightlifting. Nothing to bulk up or anything, just moderate stuff. I have a really good friend of mine who is a bodybuilder and wants me to start working out with him so I may have to do that soon haha. I need to get into the gym soon.

Coke or Pepsi?

Mac or PC or Linux?

Android or iPhone?

eBooks or real books?

Coke. I'm from the south. Mac. Audio engineer/music producer. iPhone. Real books.

Hey man, hope all is well! How does bruising work then? Do you bruise a lot more than others and bleed internally orrr?

^{Sorry I dont know much about this..}

Also what about tattoos? I'm getting tattoo'd tomorrow woo!

I probably have a lot more bruises than most people on any given day. I'm pretty clumsy so I usually have bruises on my arms/legs.

Hope the session goes well!

So can just a bump that causes a bruise cause bleeding internally?

Also i scrolled down and saw what you said about tattoos haha I'm sorry i was lazy. Im getting a half cover up/fix up job on an old tattoo on the whole inside of my forearm, can't wait to get it fixed but cba with pain.

Do you do anything like skating or do you avoid risky business like that?

Yeah, pretty much. Sometimes something really simple like a bump can cause a pretty painful bleed and I have to treat it. It hurt like hell when I got the inside of my forearm tattooed haha, that's not a fun spot. I rollerkated when I was a kid and didn't have any issues. I never really skateboarded or anything and kind of avoided it since it's riskier. Plus I look ridiculous if I try to stand on a skateboard, I'm awful at it.

Is it sore when it dosnt stop bleeding? Like do you feel it loads?

Yeah, i have most of my left arm done bar my elbow and the inside of my upper arm like under my armpit, i am not looking forward to that shit!

Skating is fairly risky i suppose specially if you're learning from scratch, my gf is trying to learn at and has taken some heavy falls just from pushing about. I sorta take it for granted when i've been skating for years, still take some huge falls sometimes though.

Yeah, it's painful as shit and it sucks. Some areas hurt way more than others.

I'm working on my left arm as well. I still have to do my elbow and my inner bicep and armpit area and I'm not looking forward to it either. My wife has the inside of her upper arm done and she almost cried when she was getting tattooed.

My best friend has skated for years and he's always tried to teach me, but seriously I'm so bad at even just trying to stand on a skateboard I gave up. I was the guy hanging out while everyone else skated.

Man thats crazy, can't imagine that, atleast getting tattood is sweet though!

My best mate has there done as well and said it was so sore he felt like he was having an outer body experience watching himself get tattood. I can't wait to get this abomination on my right forearm sorted tomorrow so i can start putting more on my right arm!

Just wrap yourself in bubble wrap and jump on a board haha!

Haha, out of most of my friends I'm probably the least tattooed so when I bitch about pain they make fun of me for it.

Hope everything goes smooth tomorrow man!

I may just have to do that!

My gf shouted at me recently for asking my tattoo artist to try this new numbing stuff that you spray on after the line work is done. Its not that it was too sore, i just couldnt be assed with the pain haha

Thanks man! Have a good weekend!

I've actually used that stuff towards the end of a 6 hour session and it was amazing. Couldn't feel anything haha.

You too man!

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Only if I can use my bare hands.

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OH THANKS DAD

If I prick you, do you not bleed?

Do you?

do you severely love blood?

Obviously. One of the reasons I really enjoyed Bloodborne.

Have you ever heard of Idiopathic Thrombocytopenia Purpura (ITP)? A lot of people mistake ITP for Hemophilia or vice versa.

I have. Isn't it caused by a virus?

The acute form is viral but the chronic form's cause is still unknown. Some say the chronic form might even be genetic. Both me and my cousin have ITP. I had the lowest count of platelet of 1,000 that could have brought a lot of complications (normal platelet level is 150,000 and up). How's your platelet count normally at? I just wondered what numbers do you look at in the Complete Blood Count tests?

Gotcha. As far as I know, I think my platelet count is normal. It's just that my factor IX count is <1%. What do you use to treat ITP?

Either steroids such as Prednisolone or IV ImmunoGlobulin in my case. The steroids can be oral or IV and I hated them! Steroids made me have moon face. The cheeks became fuller and round, hiding the cheekbones more. When I bleed when my platelet is low, it doesn't stop or very slowly stop. The blood vessels in my eyeballs and underneath my skin pop giving the appearance of red dots or petechiae. Do you get petechiae (tiny bruises)? I was at first mistaken for Dengue Fever since I was diagnosed in Malaysia.

Oh, okay. Sounds a lot different than what I'm used to. I've never had petechiae.

Have you ever been a situation where you're bleeding and you thought "oh shit, I'm actually going to die"?

Fortunately, I haven't. Last year when I got into a car wreck, it definitely shook me up, but I didn't think I was going to die.

Is it possible for you to get your wisdom teeth out? I just had mine done and this question was burning in my mind. Interesting stuff. Cheers!

I only had one and it was cut out. Took a couple of doses of factor beforehand and I was good to go. Didn't bleed much. The swelling hurt like hell afterwards, but I'm sure that's typical for anyone.

My 7year old cousin has severe hemophilia as well factor 9 deficiency. What was your experience like at that age and do you have any tips or motivations anything of the sort for me to talk to him about?

Get involved as much as you can with your state/local hemophilia chapter. There are always social workers and whatnot to help out with insurance questions and concerns. Get involved in low impact sports like karate or swimming. Also, try to get him to learn how to self infuse as early as possible. I was 9 or 10 when I started. Also, never let it get you down- my life is pretty awesome. Hope this helps!

He's a pretty positive and happy kid! Thanks for your input, its nice to have a fresh perspective as he is used to being around 'normal' kids or in clinics where every kid had blood disorders

No problem!

What happens if you get badly bruised, like injured enough to make someone else black and blue?

Have the drugs for this gotten better over time since you were a kid?

Did you get arthritis or joint problems?

If that happens, the best course of action would be to go to the hospital and get treated with a shit ton of factor to try and raise my levels as high as possible probably followed by a factor I.V.

Yes, they've gotten a lot better. The factor I used to take was made from human blood and in the 80's a lot of if was contaminated. Nowadays the stuff I take is made in a lab and all artificial.

Personally, I don't really have any arthritis or joint problems, although it's very common for hemophiliacs to have joint issues due to excessive bleeds over the years.

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Also a bit of an anomaly according to doctors. While I have severe hemophilia (<0.1% factor 8 present in my blood) I've been experiencing an annual average of 8 bleeding incidences for close to a decade now. Admittedly, this number has gone down significantly since I got out of high school (28 y/o in 3 weeks) as I played soccer my whole life--heavily against the recommendations of my doctors. I was a stubborn kid, but I loved it so to me it was worth the risk & extra treatment. I've had my factor levels tested annually since I was a child and I am still fully severe, however I don't exhibit severe bleeding. I guess I'm lucky in that department. I don't miss the days of massive bleeding episodes dragging on for weeks & being stuck laid up or in the hospital. I once broke my ankle in multiple places (yes, playing soccer) & it resulted in a 3 week hospital stay to reset the ankle & manage pain. The perks are an extremely high pain tolerance & the option of a handicap parking pass (still don't have one, not trying to be a scumbag hemophiliac).

Hello, fellow bleeder! That's awesome you played soccer. I was a stubborn kid as well and often tried to act like I didn't have hemophilia. I go to clinic once a year and get tested as well. You and I are both really lucky that we don't exhibit severe bleeding. I average about 10-15 bleeds a year which really isn't bad at all compared to a lot of hemophiliacs and even then most are pretty minor bleeds. Totally agree on the high pain tolerance haha. I don't have a handicap parking pass either, I never saw the need for one.

When you get tattoos, doesn't that cause bleeding? And that's not an issue for you?

It typically does cause bleeding when getting tattooed. I infuse factor beforehand to have less bleeding and sometimes I don't bleed at all. From what I've been told, I bleed a lot less when I get tattooed compared to most people.