VideoAudio
On-Screen Super over background:Real Patients Speak
MS on Dr. TeitelSuper:Dr. Jerry Teitel has been Medical Director of the St. Michael’s Hospital Hemophilia Treatment Centre since its founding in 1983
Dr. Jerry Teitel, Medical Director, Toronto and Central Ontario Hemophilia ProgramSt. Michael’s Hospital
Dr. Teitel: After a really, a long period of stability in hemophilia treatment, the field is exploding and it’s exciting for all of us.  



Hemophilia is an inherited disease that causes bleeding because of deficiency of a protein in the blood that is necessary for normal blood clotting. People with severe hemophilia are at risk of having spontaneous bleeding, as far as we can tell, into joints…typically into the knees, the ankles and the elbows. That causes the joints to become very painful, to expand, and ultimately leads to damage in the joint, with crippling arthritis.
MS on MohammedSuper:Mohammed Husan Qureshi (Hasan)Hemophilia B PatientDiagnosed age 6 months in Pakistan
Hemophilia B is very rare, affecting just 1 in 50,000 people (approximately 600 Canadians)
Mohammed: I’m currently 22 years old. In UIT studying Kinesiology, in my final year. I’m Hemophilia B patient.



I was diagnosed at, when I was 6 months old. And I’ve lived with Hemophilia all my life.
MS on Dr. TeitelSuper:Dr. Jerry TeitelDr. Teitel: It’s often known that it’s in the family. So, women will know that their unborn son may be affected by Hemophilia. Sometimes it’s detected after birth because of unexpected bleeding.
MS on MohammedMohammed: There was no family history, not that we knew of initially. It was just me. I fell off my cot when I was a baby, and then I had a bleed in my knee.
MS on Dr. Teitel:
Patients with severe hemophilia, such as Hasan, bleed frequently; sometimes once or twice a week. Bleeding may occur spontaneously into their muscles and joints.
Dr. Teitel: Parents may be devastated by the diagnosis, if they were not aware that there was Hemophilia in the family. If there is hemophilia in the family, they’re typically well-prepared. But, to have a child who has a severe, life-long bleeding disorder, without any notion that that was going to happen, can obviously be a severely traumatic event.  
MS on MohammedMohammed: Initially, my parents were pretty devastated about it. They didn’t know what hemophilia was, they had no idea. So I did feel isolated growing up with hemophilia. I was left out of every activity. I grew up different. That’s the word that I’m looking for.  My parents, they gave special instructions to my teachers to take special care of me. At the same time, it took a toll on me. I wasn’t able to play sports. I was that kid in school, who wouldn’t be part of almost everything.
MS on Dr. Teitel
Super:Although spontaneous bleeding is most common in severe hemophilia, bleeding with injury is increased in all forms of hemophilia. This is the biggest concern when children with hemophilia play contact sports.
Dr. Teitel: The impact of hemophilia is bleeding, which is most typically into joints, large joints and into muscles.
And this can severely impact one’s ability to engage in activities of sports and education and normal daily activities. It can be a very disabling illness if not treated aggressively. Bleeding into the joints, as you can imagine, is extremely painful. It stretches the capsule. Bleeding into muscles can press on nerves and can cause nerve damage. So these are, not only are they painful events, but they lead to long-term damage.
MS on MohammedMohammed: For example, if it’s a bleeding in my knee, I experience throbbing pain in the joint, um, there’s swelling, there’s heating up. There’s most importantly, loss of range of motion in the joint.
MS on Dr. TeitelDr. Teitel: The challenge in hemophilia is to allow patients to live, essentially a normal life. That is normal with respect to full participation in leisure activities and school and work activities. To do that though, requires a really strong commitment by patients and their families because the treatments need to be given frequently and they are very cumbersome to deliver.
MS on MohammedMohammed: My veins are very hard from all the infusions cause of the scar tissue. And you know, to be honest, though, and not to sound unthankful, but as someone who has to infuse every day, it takes about 5 to 10 minutes to infuse, like you have to set up everything.
Super:At age 16, Hasan moved with his family to Canada.
MS on MohammedSuper:Prophylaxis is the regular infusion of clotting factor concentrates in order to prevent bleeding.Mohammed: When I came to Canada, I was about 16 years old. At the time, I wasn’t aware that there was specialized program for treating hemophilia. They put me on my Factor regimen, which is the prophylaxis treatment that I’m on. And when I came on that, things took a turn for the better. I was able to become more physically active. I was in high school at that time, so I was able to do things that I could never do before, which is playing sports…to a certain degree. I felt more normal.
MS on Dr. Teitel Dr. Teitel: I think we’re now able to control and prevent bleeds. The challenge, really, is to do it in a way that has the less interference with one’s lifestyle. In other words, right now, people may have to inject, intravenously, their replacement product several times a week. That’s a very cumbersome treatment schedule. So our goal is to try to reduce the number of infusions.  
MS on MohammedMohammed: Right now, currently, my regimen is once a week. So every 7 days, Dr. Teitel has prescribed me to take Factor 9. And so, the product that I’m on right now, it’s pretty good. It’s long-lasting, so it has a better half-life. So, when I infuse it say every Friday, and then I have til the next Friday to infuse again. So, for the whole seven days, it will stay in my system, and it will keep me protected.
MS on Dr. Teitel
Dr. Teitel: I think we can tell parents now, who are for example, expecting to have a child with severe hemophilia, we can tell them that their child can anticipate a normal lifestyle, a normal lifespan, and by the time that child grows up, I’m sure they won’t be using the kind of treatments that we’re using today that require frequent intravenous injections.   
Super:Hasan is physically active, he plays badminton, he lifts weights and he studies kinesiology to learn more about the human body.
MS on MohammedMohammed: Optimistic. I’ve been hopeful. I’ve been very physically active and I’ve had very minimal bleeding episodes. Here I can say that I’m very happy and I’m being treated very well. And I’m confident and I’m hopeful for what the future holds for me.
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VO: To learn more about hemophilia, please speak with your healthcare professional. Made possible with support from Novo Nordisk Canada, Inc.