Hemophilia 3 - Treatment‬‬ | AboutKidsHealth at The Hospital for Sick Children

Описание: How is Hemophilia treated? To learn more visit:
https://teens.aboutkidshealth.ca/Arti...

This is the third video in a series created for a website devoted to helping boys with Hemophilia transition to adult healthcare.

This video is provided for general information only. It does not replace a diagnosis or medical advice from a healthcare professional who has examined your child and understands their unique needs. Please speak with your doctor to check if the content is suitable for your situation.

Cette vidéo sert à donner des renseignements généraux seulement. Elle ne remplace pas le diagnostic ou les conseils médicaux d'un professionnel de la santé qui a examiné votre enfant et comprend ses besoins uniques. Veuillez consulter votre médecin pour vérifier si le contenu convient à votre situation.

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VIDEO TRANSCRIPT

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. Every day 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 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.