Treatment for bleeds in hemophilia has been around now for about thirty to
forty years. Before that there really was no therapy that existed and patients who
would get bleeds, their joints would usually swell up and it would be very
very painful. The consequences of that it would be that they would destroy their
joints at young ages, and by the time that these children who would be
adolescents or adults, they were often quite crippled. Once I've determined that
I do have a bleed, then go about getting the factor. Once you get it, then you mix
it and then you do an infusion. Patients with hemophilia are missing factor so we
can simply give them a factor. At least for a period of time they have
enough factor to stop any bleeding and also to prevent it bleeding. In the blood
there are a bunch of different factor, and they basically help out the
platelets that clot the blood. So they basically form like a spiderweb type
thing and it enables the clot to form properly. Someone has to be given through
an intravenous put into a vein and then it lasts for a few days, but it will
disappear. Most people have do home infusions now like you can do it
yourself, or have a parent do it sometimes you might come to the hospital
to have it done. I learned to self-infuse at camp. At camp, that was the main part when I
started learning. Everyday I do an infusion myself. The nurses were like
extremely helpful, that was basically what got me started in infusing myself.
I was extremely nervous, but I did it and I was really happy.
It was a scary. Like the first time yeah I was definitely nervous because I've seen
at times where you've went in and you've missed the vein completely and you'd
have to pull it out and put it right back in. I didn't like that part at all.
But after a couple times, a few times, you get used to it the nerves go away and
you're able to do it. Many patients, and particularly those with severe disease,
actually receive factor on a regular basis to prevent any bleeds from
happening. And the majority of patients with haemophilia do very well when
they're on this type of preventive therapy, which we call prophylaxis. The
levels of factor in my blood is four percent. A regular person can be at 170 percent. So
when you go from that to four, you can really see like the difference, and then
people that are more severe is like less than one. In ever since now with
prophylaxis, we are turning our boys with severe hemophilia, those were less than
one percent factor eight or nine, into moderate haemophilia where they bleed infrequently.
Before you any sports or anything now I try to get an infusion so I won't get badly hurt.
I think now that we have safe products, it's about prevention.
It's about doing things to prevent bleeds. Over eighty percent of persons in the world
with hemophilia are either undiagnosed or have very limited access to factor
concentrates. In the past, patients with hemophilia
unfortunately particularly the 1980s were exposed to a number of viruses such
as HIV and hepatitis. And, and that back then that was the most feared
complication of having haemophilia. That really is a thing of the past and it's
no longer something that is seen at all. So if I could do one thing in across the
globe, I would I would I say all persons with hemophilia had full and
equal access to safe factor concentrates. Because I think that is the most crucial thing right now.
Because if you have that, you can treat, you can take away pain you can do
surgery. You can prolong life. You can do all of the things
that we've come to take for granted here.