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BEING ACTIVE WITH A BLEEDING DISORDER

Ned Bixby, SPT Jennifer Newman, PT

UNC-Chapel Hill UNC Hemophilia Treatment Center

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GETTING TO KNOW YOU

Name
Grade
Activities you participate in now?
Activities you would like to participate in?

Before we begin, I would like to know a little bit about you guys and the activities you like to do now and maybe what are some activities you would like to participate in. Activities does not need to just be about sports, they can include participating in stage performances, such as being in a band or performing in theater or dancing. It can be literally anything you do to be active

I’ll give you an example: When I was in high school my favorite activities were soccer, tennis, weight lifting in the gym, marching band, and performing in our school musicals

****This part will depend on how many kids attend. Since we are expecting around 10, this would work, however if it is closer to 20, I will not have the time. In that case, I would ask the kids to shout out some activities they like to participate in. Then I may ask them about what they wish they could participate in, but maybe are not allowed to.****

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BE ACTIVE!��GET INVOLVED!

I’m here to tell you that you should be active and participate in activity because there are so many incredible benefits to your overall health that we will talk about. It’s good for you to get involved. I want you to be able to go out with your friends and play sports, or go to the gym and workout, or get involved with the theater productions (or whatever activities they mention to me that they would like to participate in). I want you to be included and to live an active and fun, fulfilling life. But, remember, being active can mean so many different things! In sports, you can find ways to be involved by being a manager, being an announcer, or coaching. You could be involved with teaching swim lessons or if you don’t want to be on a stage in front of a crowd, you could still be involved and help with stage management and building the scenes.

The reason being active is so important is because scientists are performing studies that show that participating is actually better for you than sitting around and avoiding activity. Avoiding activity leads to more time being in front of a screen, such as watching TV or playing video games, either on a console or on a computer. When you participate in regular after school activities, you are automatically reducing your time that you can be in front of a screen. With activity of course comes an increased risk of sustaining an injury and causing a bleed, which is why we will discuss ways you can minimize your risk. But, researchers are now understanding that being too conservative and avoiding activity can lead to many other health conditions, such as obesity, diabetes, CVD, osteoporosis, and depression.¹ Maintaining a healthy weight and strengthening muscles can decrease bleeding frequency because it reduces the impact on the joints.¹ If you have weaker muscles and are overweight, you are asking your joints to support your body which is not what they are meant to do. So how do we get you up and moving to become stronger and healthier, while at the same time minimizing your risk of having an injury?

Lobet S, Lambert C, Hermans C. Stop only advising physical activity in adults with haemophilia… prescribe it now! The role of exercise therapy and nutrition in chronic musculoskeletal diseases. Haemophilia 2016;22(6):e554-e556. doi:10.1111/hae.13073.

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BE SMART AND

THINK

Well first off, before you begin participating in any sort of activity, you need to talk with your hematologist who is knowledgeable about your specific case. (Ask kids): Does everyone here have a hematologist/know who they are? Your hematologist is the doctor you see specifically for your bleeding disorder. In fact, your hematologist should be the one who is filling out your sports clearance and participation forms.

(Ask kids): Who here sees a physical therapist? Physical therapists are specialists in human movement and can be the greatest help for understanding the best ways to move and position yourself during activities to prevent injury and they are also your best resource for returning you to your activity after you have had an inury.

And of course, all of you are smart people and using your common sense to decide which activities you should be participating in. When thinking about beginning an activity you should be thinking to yourself, “should I be doing this?” ”What would my Momma say?” ”Would this give my doctor/physical therapist the side eye?” If any of these thoughts are going through your head and you have some doubts, you may want to speak with your hematologist and think about some other activities that may be safer or be thinking of ways you can protect yourself or make the activity safer.

To give you a better idea of what I am talking about, let’s take a look at some specific activities.

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NHF PLAYING IT SAFE

Gym Activities

Sports

Activity	Risk level
Football	3
Soccer	2-3
Baseball Basketball	1.5-2.5
Tennis Bowling	2
Disc Golf Fishing	1.5-2
Golf	1

Activity	Risk level
Power lifting	3
Crossfit	2-3

Running/jogging	2 (on treadmill: 1.5)
Yoga	1.5-2
Circuit training Weight/resistance training Rowing	1.5
Elliptical Swimming	1

I don’t know if any of you have seen this pamphlet they have on the National Hemophilia Foundation’s website. If you type in NHF playing it safe into Google, it’ll be the first link. What I like about it is they rate a bunch of different activities on their risk of sustaining an injury. 1 being low risk, 2 being moderate risk, and 3 being high risk. The activities are not rated specifically for individuals with bleeding disorders, but for anyone in general. As you can imagine, sports with lots of collisions like football, rugby, and extreme sports have a 3 rating. Soccer is about a 2-3, I personally might put basketball around there as well, but basketball and baseball range from 1.5-2.5. Tennis is a 2. And golf is a 1 as you might guess. Something I found interesting about this PDF file is the difference between pick-up games and organized games. (Ask kids): Who could list off some reasons of why one would be better than the other? Answer: Pick-up games tend to be less competitive than organized games, however people generally do not wear the protective gear that they would normally wear for an organized game. Organized games are also supervised with personnel who are trained to deal with injuries that occur and can help minimize the severity.

But, what I want to share with you is the ratings of some of the activities you can do in a gym setting because the risk with these activities may be less known. I tried to match up gym activities with sports activities based on their ratings. (Ask kids): Why might power lifting and Crossfit be at a level 3? Answer: these are fast full body movements with a lot of weight. When you attempt to move a large amount of weight quickly, there is increased risk of having poor form and causing injury due to straining. There is less risk of concussion injuries because you are not coming in contact with other people like some sports. (Ask kids): Does everyone know the difference between power lifting, circuit training, and weight training? Answer: Power lifting, as previously mentioned, involves large, full body movements done very quickly. Weight training is performing more isolated movements with weight, such as bench press, bicep curls, or pull-ups. Circuit training is when you perform several different weight training exercises in succession and move from one exercise to the next performing one set each with minimal rest between each. For example, you may perform a chest press, then pullups, then bicep curls, then crunches, then tricep extensions, then squat, and then repeat the whole cycle 3 times. Crossfit combines all 3 within an hour typically, which is why it has a range of risk because it depends on the tasks you are performing that day.

(Ask kids): Why does running on a treadmill reduce the risk compared with running outside? Answer: Running on a treadmill provides a controlled environment and running on a flat, predictable surface. Outside there are more elements that are out of your control. I would say that if you were running on a track outside, it’s probably a level 1.5 activity, but running on a trail that has uneven ground, roots, rocks, and stumps, this would make running more of a level 2 activity. (Ask kids): Any other questions about these activities and their risk levels?

Anderson A, Forsyth A. Playing it Safe: bleeding disorders, sports, and exercise. National Hemophilia Foundation 2017. Available at: https://www.hemophilia.org/sites/default/files/document/files/Playing-It-Safe.pdf. Accessed January 22, 2018.

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CONTROL WHAT YOU CAN

(Ask kids) Is everyone here on prophylaxis (who takes factor at home)? These treatments of factor are truly an amazing medicine you all have that will allow you to more safely participate in physical activity. When you treat, your body is able to care for itself more similar to someone who does not have a bleeding disorder. However, unfortunately, you have to keep treating yourself often to keep yourself safe. I’m sure everyone here has their own schedule for taking factor, which is why if there’s one thing that you can take away from this presentation, it is to always, always, always talk with your hematologist about participating in activities prior to actually doing it. In a minute here we are going to discuss how activity should be correlated with your treatment schedules as best you can. With your doctor, let them know what you would like to do, but also think smart for yourself in trying to decide which activities are right. Prepare a list of the activities you are interested in and provide a range of activities in terms of risk level. I do not want you to go into an appointment with one sport on your mind and then being shut down by your doctor because it is too dangerous for your condition. Have some back up plans of other activities you are interested in. Talk to your hematologist about all of them and weigh the risks and benefits and decide together what the best opportunities are. Trust me, there are things out there for you that are fun and can be done safely.

(Ask kids): What are some aspects of sports that are out of you control or that you cannot change? Answer: Collisions with other players, being hit with equipment, being pushed and falling

(Ask kids): However, there are some measures you can take to minimize your risk, what are those? Answer: wearing the right equipment, wear proper fitting equipment, participating in sports with less contact, abstaining from some aspects of the sport (having a pinch runner in baseball), timing treatments of factor with days of activity, playing surfaces, wearing eye wear

Negrier C, Seuser A, Forsyth A, et al. The benefits of exercise for patients with haemophilia and recommendations for safe and effective physical activity. Haemophilia 2013;19(4):487-498. doi:10.1111/hae.12118.

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Be

in

Charge

This is your condition and at your age, it is your responsibility to take control of it. You guys are in this transition period where you will be leaving for college or beginning a job and potentially are moving out. You have to be able to treat yourself or know where to go to receive treatment and to also be able to regulate your treatments with you activity schedules.

When participating in activities, your hematologist may advise you to plan them around your treatments as best as possible. For example, let’s say you are treating 3x per week, Monday, Wednesday, and Friday, and you like to go to the gym to lift weights and run on the treadmill or ride the bike. The best days to workout would be the same days you treat, Monday, Wednesday, and Friday, and to make sure you are treating before you work out. This way if you were to have an accident of bumping into something, or dropping a weight on yourself, or rolling your ankle, your body already has the necessary components to begin the healing process.

Talking with a physical therapist can especially be helpful for designing a workout program specifically for your needs. They can give you safe exercises to improve what your body needs the most and then also let you know what exercises you should be avoiding. Keep in mind that some of these decisions can be done through email or phone calls so you do not need to travel long distances to the treatment center.

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RECOGNIZING A BLEED

Tightness

Swelling

Heat

Pain

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WHAT DO I DO IF I HAVE AN INJURY??

This is a very important conversation you need to have with your hematologist. Your doctor may tell you to always have Factor on you when you workout or participate in activity so that when an injury does occur, you can treat yourself right away. The longer you wait, the more complications that can occur and these complications can have an effect on you when you are an adult. When blood remains around the joint, you are increasing your chances of the blood causing changes to the shape of the joint and of causing damage to the joint from the increased pressure.¹

After sustaining an injury, tell someone about the injury! Contact your hematologist and let them know what happened and describe what the injury looks like and how much pain it is causing.

Hemophilia. National Heart, Lung, and Blood Institute (NHLBI). Available at: https://www.nhlbi.nih.gov/health-topics/hemophilia. Accessed February 2, 2018.

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So,

when can I return to exercise??

This is not a question that I can answer with an exact number because every bleed sustained is different. The severities and the structures affected and how soon you were able to treat will all help determine your prognosis. Also, how strict you are with following the recommendations from your health providers. You need to know is how important it is to make sure you give your body adequate time to heal itself. We want the joint affected to return to how it was prior to you sustaining an injury. If it is not controlled and you return to participation too early, you will be increasing your risk of developing deformities and other chronic conditions such as arthritis. Go see your hematologist and physical therapist who are very knowledgeable about bleeding disorders because they will be able to help you return to your activity faster. They will be able to assess your injury and give you things to work on to improve the healing process and minimize complications that can occur down the road. I’m not going to lie to you, you may be on crutches or in a sling and you may have to refrain from participating for awhile, but what is worse is trying to participate too early and experiencing long term effects of that decision like having pain with simply getting up and down from a chair when you are 30. Or having to use a cane all of the time to relieve pressure through your joints when you are an adult. Think about the long term!

Negrier C, Seuser A, Forsyth A, et al. The benefits of exercise for patients with haemophilia and recommendations for safe and effective physical activity. Haemophilia 2013;19(4):487-498. doi:10.1111/hae.12118.

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Listen to this person!!

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And this person!!

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GETTING IN THE GYM

10 minute warm up

15 minutes train

25 minutes

10 minutes

Today I want to focus on activities you can perform in the gym because you are all at that age where working out generally becomes of interest. I began working out when I was a freshman in high school and continue to work out regularly to this day because I enjoy it and I want to remain healthy. The World Federation of Hemophilia has a scientific journal and have developed some simple guidelines for safe and effective physical activity in a gym setting. And what you should know is that actually a lot of these recommendations are the same as the general public, so it’s nice to know that you guys are not limited because you have a bleeding disorder. If I were to prescribe you a plan today based off the recommendations of the World Federation of Hemophilia, it would be a 10 minute warm up on a bike, treadmill, or elliptical, 15 minutes of endurance training, 25 minutes of resistance training, and 10 minutes of stretching. That would be a great hour of exercise and I would say perform this 3x/week. I would also recommend that you change up the exercises and not just do the same routine every time you go. One, it will get boring, but two, you want to create a well balanced body. Each exercise targets different muscles in different ways, so you want to be sure you vary your regimen.

Negrier C, Seuser A, Forsyth A, et al. The benefits of exercise for patients with haemophilia and recommendations for safe and effective physical activity. Haemophilia 2013;19(4):487-498. doi:10.1111/hae.12118.

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WHERE CAN I GET STARTED?

Don't be like this guy

When deciding to work out at a gym, it is really important to seek professionals who can help with developing good form and mechanics. You can cause joint bleeds if you do not perform exercises correctly. (Ask kids): Who is the first person you should talk to about working out? Answer: Your hematologist. You should also talk with your physical therapist as they may help with strategies of finding people who can teach you good form. Some additional people you could reach out to would be your PE coach at school, finding a personal trainer at your local gym, or finding a friend that has had coaching before and understands performing good quality exercises. This should not be something where you show up to a gym without any help and start picking up weights and putting them back down. If so, you may end up on Instagram looking like one of those guys or girls that clearly does not know what they are doing. (Click on link)

Gym memberships are a great idea, however they are also expensive. A great resource for you guys is that there are grants that can pay for these memberships. Your hematologist is the one that you can speak to about these funds. Other options include going to public parks or walking trails in which you could go for runs or hikes or get together with friends to play. Parks and trails are just a quick internet search away!

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LET’S MOVE!

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NOW GO OUT ��AND PLAY!

I’m sorry you all had to get up early on a Saturday to listen to this talk, but I hope you at least learned something today and you were inspired and motivated to work out or play something or participate in something. I want you all to know that not only is it okay to pursue an active lifestyle, but it is encouraged. So go out there and enjoy your life and instill healthy habits to prevent other chronic diseases (list them again) that trouble too much of our population. I urge you though to think about the activities you are participating in and doing all that you can to minimize the risk and to prepare yourself for any injuries that can occur so that you can live a long and healthy life with a bleeding disorder. And remember, who should you talk to first before beginning any activity?? (Hopefully kids answer): Our hematologist!

Thank you!