Hemophilia 4 - It's all about bleeds | AboutKidsHealth at The Hospital for Sick Children
Why are bleeds important? To learn more visit:
https://teens.aboutkidshealth.ca/Hemo...
This is the forth 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:
I was playing lacrosse in gym and I got hit in the leg, I didn't get an infusion for it because I didn't think it was that bad. It swelled up a lot and then it's like a week of school. Patients with severe haemophilia don't tend to have any bleeding symptoms in the first six to nine months of their life. But after that is when they start to bleed. And the bleeds, they tend to get are bleeds into their joints. Well I was diagnosed when I was seven and like it was because of the first bleed that I had in my knee. I was playing soccer and got kicked in the knee. It swelled at the time and they put a cast on it and then ended up draining blood right out of the kneecap. So, they just stuck a needle and pulled out a couple syringes full of blood and then put a cast on it again. And that really like affected me because I can still remember that. I was at school for about a couple months and just couldn't do anything really. Like I would stay inside during recess and couldn't go outside with my friends. So that was probably the biggest bleed that I can remember. The most common joint bleeds that we see are knees, ankles and elbows.
And blood is very corrosive to the cartilage. The more bleeds you have, that joint space decreases. The cartilage, instead of being nice and smooth, like a drinking glass, becomes very pitted and has rough edges. So it. So, your joint doesn't operate nice and smoothly. Usually there's. It depends on the bleed, but some limitation in range of motion. And we do know from more recent literature that, especially if you take weight on a joint, that has blood in it, that you can actually cause direct damage to the cartilage lining of the bones. So, besides the damage that could occur to sort of later, this can occur quite quickly. So especially in the first couple of days where there's a fair bit of blood in the joint, we want to make sure the weight is off your joint. So you'd be using the crutches, not taking any weight until you see that the swelling is almost gone.
But they also will get bleeds into their muscles, particularly the muscles in your body and your calves, in your arms. But occasionally they can have more serious bleeds such as a bleed into the head. It's a quite a rare event but it can occur. It's more internal bleeding that's the issue, particularly into you know the joints, like elbows knees and ankles. But also, you know your vital organs, kind of on the inside and also head bleeds that's like the number one thing that hemophiliacs should be concerned about. If it's internally, then it's going to be like swelling. It's gonna feel hot. It's definitely going to be painful. We want to stop that bleeding as soon as possible. That's partly why we teach families to home infuse because as soon as you suspect a bleed, treat it right away then call your hemophilia team to you and say hey this is what has happened. They'll often let you come in and you'll say do a second dose tonight and we'll see you tomorrow.
As far as talking with my son about whether or not he's having a bleed, I always tried to reassure him that you're never wrong in coming to us whether or not you have a bleed. After you have a treatment, you do feel like a slight difference because you feel like okay like everything is being repaired. So, like even if you thought you had like a minor cut or like a minor thing and you were treating like a major bleed, you'd think that all the minor things are getting fixed up and repaired so you kind of feel like better after. If I could change one thing about hemophilia, probably the pain and swelling of it. So, if I got like a joint bleed it wouldn't swell up and hurt as much. Maybe just swell up a little and hurt a little.
#bleedingdisorders
#hemophilia
#chronicconditions
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