Ds's sweetie has a brother with hemophilia...

[elizabeth]

Still a problem. http://health.nytimes.com/health/guides/disease/hemophilia-a/overview.html . There are other problems than the bleeding. Bleeding into joints is a pain no one should have to live with if there is a choice. I have a disease that does so and it is awful. There were no genetic tests then(nearly 50 years ago) but thank goodness it did not pass to my daughter. Thallesemia and Rheumatoid arthritis are cruel and painful. I have been tested for HIV many times and come up negative by sheer luck. I stayed alive on blood transfusions and nearly died from shock several times. Now that I have RA and cannot take most of the standard medications because of the underlying blood disorder I am disabled in ways that were unimaginable when just looking at the Thallesemia alone. Here is a link for those who are curious. http://medical-dictionary.thefreedictionary.com/Thallesemia . I am glad to be alive, most definitely but there are weeks when I wish I was normal. Sounds selfish but there you have it. It is really **** hard to live with.

[LucyStoner]

Thank you, I stand corrected on that point, I wasn't sure. I still stand by my opinion, though.

 

I think we share that opinion - I would not put the cart before the horse either. ;). There are much scarier genetic issues than this to me and I would not consider this a dealbreaker.

[mandymom]

I was reading a bit about that, but couldn't tell--does it happen often?

 

Depends on the person. My oldest ds has a "target joint"...his right ankle. He has bleeds about twice a year in it, sometimes more, sometimes less. That's about the only joint he's had bleeds in. He wears a small ankle brace for lots of walking/standing and we treat with prophylactic treatment if he is going to do a lot of walking. He had one muscle bleed in his bicep. That's it for bleeding for him. We catch most bleeds before they get severe at all (my son can tell when he is getting one) and we treat it. He's down for less than 24 hours most of the time (and then he's never really "down").

 

My youngest ds has never had a joint bleed. He's had lots of mouth bleeds which are not dangerous at all, just messy. He's also had surgery which required clotting factor before and after. He actually has a higher severity, but it hasn't played out as joint bleeds for him.

 

My oldest ds has a friend with hemophilia who never had a bleed until he was 14 years old. Of course, if severity is really high, bleeds are much more frequent.

 

The thing with hemophilia is that severity is also passed on. If your ds's girlfriend has family members with a high severity, she would more than likely have a son with high severity. She could have family member with very mild severity. Mild severity can mean that a man will never have any problems unless there is a major injury (like my ds's friend).

Edited August 8, 2012 by mandymom

[mandymom]

Still a problem. http://health.nytimes.com/health/guides/disease/hemophilia-a/overview.html . There are other problems than the bleeding. Bleeding into joints is a pain no one should have to live with if there is a choice. .

 

I've read most every type of article there is. I've lived with it for almost 16 years as a mother of 2 sons with hemophilia and almost 40 years as a daughter of someone with hemophilia. I just asked my oldest ds what he thought. He said, "I'm sure glad I was born." :001_smile:

 

And he really doesn't live with all that much pain. Treatment is really good these days.

Edited August 8, 2012 by mandymom

[LucyStoner]

Still a problem. http://health.nytimes.com/health/guides/disease/hemophilia-a/overview.html . There are other problems than the bleeding. Bleeding into joints is a pain no one should have to live with.

 

From your link, under "outlook" you will find a statement that matches what many have said on this thread.

 

"With treatment, the outcome is good. Most people with hemophilia are able to lead relatively normal lives. A small percentage of people with hemophilia will develop inhibitors of factor VIII, and may die from loss of blood."

 

I am sorry that you have a serious health problem. I am not sure why you feel the need to color hemophila as something that is much worse than it is in this era.

 

Besides the fact that many live well with the condition, a young couple has options to reduce or eliminate the risk, like gender selection, adoption, donor eggs/sperm or not having children.

[Julie in CA]

Depends on the person. My oldest ds has a "target joint"...his right ankle. He has bleeds about twice a year in it, sometimes more, sometimes less. That's about the only joint he's had bleeds in. He wears a small ankle brace for lots of walking/standing and we treat with prophylactic treatment if he is going to do a lot of walking. He had one muscle bleed in his bicep. That's it for bleeding for him. We catch most bleeds before they get severe at all (my son can tell when he is getting one) and we treat it. He's down for less than 24 hours most of the time.

 

My youngest ds has never had a joint bleed. He's had lots of mouth bleeds which are not dangerous at all, just messy. He's also had surgery which required clotting factor before and after. He actually has a higher severity, but it hasn't played out as joint bleeds for him.

 

My oldest ds has a friend with hemophilia who never had a bleed until he was 14 years old. Of course, if severity is really high, bleeds are much more frequent.

 

The thing with hemophilia is that severity is also passed on. If your ds's girlfriend has family members with a high severity, she would more than likely have a son with high severity. She could have family member with very mild severity. Mild severity can mean that a man will never have any problems unless there is a major injury (like my ds's friend).

I'm not sure how severe it is with her brother. I remember praying for him when he was a little guy, and was hospitalized several times, but we moved from the area and lost touch a bit. Ds probably has some idea of how things are going for the brother.

 

Thanks again, so very much! I was hoping someone here might have the kind of insight you've provided. :001_smile:

[besroma]

I've read most every type of article there is. I've lived with it for almost 16 years as a mother of 2 sons with hemophilia and almost 40 years as a daughter of someone with hemophilia. I just asked my oldest ds what he thought. He said, "I'm sure glad I was born." :001_smile:

 

And he really doesn't live with all that much pain. Treatment is really good these days.

 

Thank you so much for enlightening me about hemophilia. I have learned a lot from your posts, and am very appreciative of your willingness to share.

 

Julie, I understand your concern. I think it is great that you desire to be informed when it is time to discuss this with your DS.

[mandymom]

I'm not sure how severe it is with her brother. I remember praying for him when he was a little guy, and was hospitalized several times, but we moved from the area and lost touch a bit. Ds probably has some idea of how things are going for the brother.

 

Thanks again, so very much! I was hoping someone here might have the kind of insight you've provided. :001_smile:

 

It's my pleasure! It's actually not something I get to talk about very much because it is pretty rare :)

 

It's quite possible that if he is in his late teens, early 20's that hospitalization would have happened more frequently when he was a child, even if severity is not high. Treatment is SO much better now. Recombinant factor (clotting factor made in a lab, so no blood product) was not available until right around the time when my oldest was born. Clotting factor on the whole has not even been around that long. My dad used to have to get plasma when he was having a bleed. The factor in plasma was what improved the clotting, but it was not anywhere nearly as effective as straight clotting factor that is given now. The more frequent the bleeding, the more damage that is caused to the joints, which in turn can cause more bleeding. This is what caused the crippling arthritis that most hemophilia patients had in the past. Now, if treatment happens quickly, there is limited joint damage. In fact, most boys/men who have severe hemophilia are on routine prophylactic treatment to prevent bleeding.

 

I will say that treatment is not cheap. That said, my father never had trouble with having insurance, and we have never had trouble having insurance for my sons as well. We do bypass the local hospital and go to the Children's Hospital downtown in emergencies (even when they are not hemophilia related) because most doctors out there don't know all that much about hemophilia, and some like to try to convince us they do when they don't. :tongue_smilie:

Edited August 8, 2012 by mandymom

[Hunter's Moon]

I haven't read all the replies and have no children of my own, so take what I say with a grain of salt ;)

 

I was recently diagnosed with something that could possibly pass on to any future children.

 

I was open with my fiance about it and hoped he wouldn't hold it against me. He was dumbfounded that I could possibly think a disease that is not my fault would be held against me by him. He understands all the ramifications of the disease and the possibility that any future children can get it (though, the chances are pretty low).

 

I think all your son can do is be there for her. I know when I found out the disease I have could be passed onto my children, I was devastated. I've always wanted children, but knowing I could pass something onto them that can cause serious health issues made me feel selfish for even continuing to want to have children. Like I said, the chance of passing it on is low, but even a small chance feels like I'd be gambling with my child's life, which isn't fair to them (though, most people with this disease can live healthy, normal lives with proper care).

 

Your concerns are understandable, though :grouphug:

[YaelAldrich]

This is interesting -- in certain sectors of Orthodox Judaism, single people in high school (or just afterwards) go to designated centers to have blood drawn to test for some ten or more diseases prevalent in Jews. They are given ONLY a number to identify themselves. When they are in the process of learning more about a person to date (before they meet preferably), they call in the two numbers and they are told whether the match would be complicated by any of those diseases (they are not told which disease if there is a complication). The people never find out if they are carriers of any of the diseases, nor do they find out any information about the potential date. They do this before there is the possibility of becoming emotionally entangled.

 

This organization, Dor Yesharim, was started by a Jew who married another Tay-Sachs carrier without his knowledge and lost several of his children to the disease. They keep all these strictures so that no has to have any knowledge of genetic problems that run in people's families.

[pfamilygal]

I would want him to be aware and encourage them strongly, if they get married, to get tested.

 

But I wouldn't think that was a reason to not get married.

 

Dh and I knew our fathers are both carriers for CF. His uncle died from it and my cousin has it. So we got tested. I carry, he does not. So our kids have a 50% chance of carrying CF, but will not have CF. We will definitely strongly encourage our children to get tested (especially if they marry Caucasians, since the risk of carrying is higher) and prayerfully make informed child-bearing decisions.

 

One of our daughters was tested in the NICU and we know she is also a carrier. I hope she chooses to have her spouse tested if she marries and decides to have children.

[mandymom]

 

This organization, Dor Yesharim, was started by a Jew who married another Tay-Sachs carrier without his knowledge and lost several of his children to the disease. They keep all these strictures so that no has to have any knowledge of genetic problems that run in people's families.

 

But Tay-Sachs and hemophilia are really apples and oranges. Yes, they are both genetic disorders, but Tay-Says is almost 100% deadly and people with hemophilia live a generally normal life.

[stripe]

I would suggest that she find out what impact this would have on any potential children they might have. She might want to get herself tested and discuss with specialists whether there is any reason she should avoid having children.

 

I have a relative with a very rare congenital condition; this person's sibling is a carrier. It turns out the sibling's spouse is also a carrier. They did more genetic testing during the pregnancy, because there are known treatments during the pregnancy to improve the outcome. This is where it would be more useful than just getting pregnant and then finding out that it would have been good to do x, y, or z first.

[lloyd77]

 

Since I don't know very much about the condition, or what lifestyle differences it might entail, I thought I'd seek advice from folks who know more than I do.

 

(haven't read all the posts, just responding to OP on page 2)

 

I'll come out of lurkdom to add my 2 cents:) I am a carrier of severe hemophilia, and have 2 sons that have the condition. (we did not know I was a carrier before I had my older son, so this was not an issue when my husband and I were dating) It is certainly something to be aware of, and take into consideration, but it's very treatable. (though very expensive to treat--DHs job doesn't pay great but has great insurance, which for us is more important)

With older children they usually do preventative treatment (to get their clotting factor up to normal) 2 or 3 times a week (for us, it's a 15 minute thing in the morning, like brushing teeth, and my son finds it about that entertaining--needles are not a big deal to him at all--we hope in the next year or two to have him infusing himself!) and then they go about normal, daily activities. School, gym, camp, sports, etc. The only things they are told NOT to do was football, full-contact hockey, boxing and wrestling. Anything else is fair game, they lead totally normal lives. I know in the past hemophilia was a very life-altering thing, but treatments have come a long way and are getting better all the time.

For what it's worth, also, the chances of having a son with hemophilia are 1 in 4 for carrier moms. It's x-linked, so mom and dad don't both have to have it to pass along the condition.

I'm sure your DSs sweetie already has seen first-hand exactly what living with hemophilia entails, though, and certainly might have her own thoughts on the matter. Has he discussed this with her at all?

[lloyd77]

But isn't hemophilia completely treatable? From what I read, the life expectency for people with it now is darn close to normal.

 

And yes, this is a touchy subject for me... :P

 

I believe, from what I've read, that the life expectancy IS normal--like 79 years or something. Not different from the normal male population.

 

And no, our factor products are no longer blood-derived. That's why they're so expensive.

[Oak Knoll Mom]

One thing to keep in mind...for many genetic diseases it takes both parents to be carriers to produce a child with the disease, and even still then it is a roll of the dice. I know this is the case with CF and possibly hemophilia as well, but i'm not sure truly. I would be very careful not to put any carts before horses, here. :grouphug:

 

This is not true of hemophilia. It's an x-linked disorder which means only the mom has to have the gene. If she's a carrier, then each of her sons has a 50/50 chance of getting hemophilia. (I'm a carrier for a different x-linked disorder, but the hereditary pattern is the same.)

[Julie in CA]

I'm sure your DSs sweetie already has seen first-hand exactly what living with hemophilia entails, though, and certainly might have her own thoughts on the matter. Has he discussed this with her at all?

I'm sure they have discussed it, just not sure he will completely understand what it all means.

 

Thank you for coming out of lurkdom to add in your perspective!

 

Ds's sweetie is a very private person, and I have no desire to intrude. Ds is very open though, and is certainly likely to talk about it with his folks while pondering it in his own mind.

[mandymom]

For what it's worth, also, the chances of having a son with hemophilia are 1 in 4 for carrier moms. It's x-linked, so mom and dad don't both have to have it to pass along the condition.

 

This is not true of hemophilia. It's an x-linked disorder which means only the mom has to have the gene. If she's a carrier, then each of her sons has a 50/50 chance of getting hemophilia. (I'm a carrier for a different x-linked disorder, but the hereditary pattern is the same.)

 

Just wanted to point out that these are not contradictory statements, lest anyone is confused. A carrier of hemophilia has a 1 in 4 chance of having a son with hemophilia: 25% chance of having a girl who is a carrier, 25% chance of having an unaffected girl; 25% chance of having an unaffected boy, and 25% chance of having a boy with hemophilia.

 

The chances of her SON having hemophilia is 50%.

 

It is carried on the x chromosome, so the only way a female could have hemophilia is if the father had hemophilia and the mother was a carrier.

 

I know this confuses some people, so I thought I would clarify.

[Catherine]

What is your evidence for saying "the blood supply is worse than ever"? I don't think that's true at all.

[Oak Knoll Mom]

Just wanted to point out that these are not contradictory statements, lest anyone is confused. A carrier of hemophilia has a 1 in 4 chance of having a son with hemophilia: 25% chance of having a girl who is a carrier, 25% chance of having an unaffected girl; 25% chance of having an unaffected boy, and 25% chance of having a boy with hemophilia.

 

The chances of her SON having hemophilia is 50%.

 

It is carried on the x chromosome, so the only way a female could have hemophilia is if the father had hemophilia and the mother was a carrier.

 

I know this confuses some people, so I thought I would clarify.

 

Thanks for this. I'm typing on my iPad while watching the Olympics, so I wasn't very thorough. :001_smile:

[elizabeth]

This is interesting -- in certain sectors of Orthodox Judaism, single people in high school (or just afterwards) go to designated centers to have blood drawn to test for some ten or more diseases prevalent in Jews. They are given ONLY a number to identify themselves. When they are in the process of learning more about a person to date (before they meet preferably), they call in the two numbers and they are told whether the match would be complicated by any of those diseases (they are not told which disease if there is a complication). The people never find out if they are carriers of any of the diseases, nor do they find out any information about the potential date. They do this before there is the possibility of becoming emotionally entangled.

 

This organization, Dor Yesharim, was started by a Jew who married another Tay-Sachs carrier without his knowledge and lost several of his children to the disease. They keep all these strictures so that no has to have any knowledge of genetic problems that run in people's families.

 

Thank you for this information. Due to the ever more diverse demographic of those who home educate one can never know how or when information may be of use to another person.

[lloyd77]

 

Ds's sweetie is a very private person, and I have no desire to intrude. Ds is very open though, and is certainly likely to talk about it with his folks while pondering it in his own mind.

 

I can understand where you're coming from, too. It is certainly a touchy subject--were I dating someone knowing that I was a carrier, I would probably bring it up and my perspectives on children, etc., fairly early in the relationship. If our perspectives were radically different, that would be best to know before you get too involved. I think for most people with hemophilia, though, it's not a reason to not have more/any children.

 

Thanks for clarifying, too, Mandy, I know it took me several visual aids to get straight the percentages! Nice to see another hemophilia mom:)

 

Julie, there is a book called "Raising a child with hemophilia" if you really want to get into the nitty gritty from a mom's perspective. They handed it to me before we left the hospital with my son. Helped me to get a better handle on it than the statistics and studies I was finding online.

[elizabeth]

What is your evidence for saying "the blood supply is worse than ever"? I don't think that's true at all.

 

Here is the information from the CDC. http://www.cdc.gov/hiv/resources/qa/qa15.htm Note there are not numbers.... If you read the thread you will see that I have thallesemia an inherited blood disorder and I have to have Iron infusions at least twice a year for 3400.00 per treatment, blood would be one third of that . No MD will do that due to the risk of HIV. There is a gap Catherine between the time the test is run and when it could have been developing and replicating unbeknownest to the recepient. Make no mistake ladies, HIV is decimating huge swaths of people still and they are generally poor, in dense population areas in large cities. I worked at Planned Parenthood for years, you cannot imagine what I have seen. Presently I practice disability law. We have dozens of HIV positive clients many of whom are young, as in under 30. I know this is not popular here but barrier birth control is the only way to stop this disease. I do not care what anyone "thinks" but if episteme ruled the day rather than opinion we could have a dialogue instead of talking past one another.

[mandymom]

Julie, there is a book called "Raising a child with hemophilia" if you really want to get into the nitty gritty from a mom's perspective. They handed it to me before we left the hospital with my son. Helped me to get a better handle on it than the statistics and studies I was finding online.

 

Agree! This is a good book....I think it's been updated several times since I got a copy with my oldest. You can also find some really good resources here. LA Kelley was started by a hemophilia mom, and I really like their books for boys!