Training somebody with Haemophilia (very serious)

[Environ]

This is a very personal situation I'm asking about. Today, I found out that my 20 day old son has haemophilia. My natural reaction in stressful situations has always been to learn about it and then use that knowledge to overcome whatever barrier I come across.

So, I had a look on the Irish Haemophilia Society's website and the overall concensus is that kids with haemophilia should exercise. So, out of curiousity, I'm wondering if anybody on this site has ever trained somebody with haemophilia and, if so, can you give me information on this. Of course, this is preparation for the future as it will be long time before he sets foot in a gym.

But, acquiring knowledge is one of my ways of coping.

Thanks in advance.

[Jobsagooden]

Hi Environ

First of all, congratulations on becoming a father. My first (also a boy) was born last week.

*I AM NOT AN EXPERT IN HAEMOPHILIA OR HAD ANY MEDICAL TRAINING, THIS IS ONLY FROM MY EXPERIENCE AS A PERSONAL TRAINER.*

I had a client a couple of years ago who has Haemophilia. Depending on individual severity will depend on how much training is possible, let alone advisable.

My client had trouble lifting very heavy weights due to bruising where the weight rested (hands, shoulders etc.) and also the worries over dramatically increasing blood pressure. However, his joints got progressively less painful and we stumbled across alternative training techniques as time went by. We focussed far more on mobility and stretching as well a swimming.

Although there is no conclusive link with nutrition, our research found many articles that recommended you should avoid vitamin E and fish oil supplements if you have hemophilia, as they seem to increase bleeding time by keeping platelets from clumping. Vitamin K plays a role in normal clotting and may be useful either from dietary sources or in supplement form, but research is needed in this area. Do not take vitamin K supplements without first talking to your doctor. (I'll try and hunt out the articles and i'll PM you)

The medication now is so good that there are very few activities that he would be unable to do. I would steer clear of contact sports until you know the severity of the condition.

I hope this helps and good luck. Enjoy being a father and i'll happily answer any questions I know the answers to.

[Beanre]

Well I'm not a PT but I have hemophilia myself, so I may be able to provide some insight. What type he was diagnosed with?

[Environ]

Well I'm not a PT but I have hemophilia myself, so I may be able to provide some insight. What type he was diagnosed with?

Severe Factor 8 Defiency/Haemophilia A. Do you use the gym and what precautions do you have to take and what is contraindicated for you? Thanks for any insight you can give me.

[Beanre]

Severe Factor 8 Defiency/Haemophilia A. Do you use the gym and what precautions do you have to take and what is contraindicated for you? Thanks for any insight you can give me.

Sorry for forgetting about this thread bro. I'm afraid I don't have much insight to Severe Hemophilia. I only have mild myself, and as such I don't need any precautions. However, severe hemophiliacs can infuse themselves daily with factor 8 doses and maintain an average level of factor. As long as no accidents happen I think he should be able to lift. Probably not really heavy weights, but I believe the gym will be an option in the future.

[wongseefu]

This is a very personal situation I'm asking about. Today, I found out that my 20 day old son has haemophilia. My natural reaction in stressful situations has always been to learn about it and then use that knowledge to overcome whatever barrier I come across.

So, I had a look on the Irish Haemophilia Society's website and the overall concensus is that kids with haemophilia should exercise. So, out of curiousity, I'm wondering if anybody on this site has ever trained somebody with haemophilia and, if so, can you give me information on this. Of course, this is preparation for the future as it will be long time before he sets foot in a gym.

But, acquiring knowledge is one of my ways of coping.

Thanks in advance.

Hi Environ, l just viewed your post by chance and would like to offer you some advice on your son's condition and how it may relate to his training in the future. Whether you take my advice is purely up to you though. I am not a personal trainer but l am a haemophiliac, who suffers from severe haemophilia A since birth and l do train in the gym regularly. So l hope this may be able to offer you some useful info.

To answer your question, regular exercise is hugely important for anyone suffering from Haemophilia. Especially , the type your son suffer's from which is the most severe type. Reason being, haemophilia usually leads to many other forms of acute problems later on in life. For example, bleeds in joints (mainly ankle, knees, hips) leading to chronic arthiritis, problems with bone density, dental problems etc.

My advice would be to learn as much as you can about severe haemophila A and then derive your own understanding from other haemophiliac's experiance, as many health professions have a bad basic understanding of what haemophiliac's can and should not do. Alot of health professions tend not to touch this topic and some could cause your son additional problems without knowing. Let alone personal trainers who aim on pushing their clients to their limit on a daily basis. Your local haemohilia society would be a good step, as speaking with other haemophiliacs is the best method to gain experiance. Many of their staff are haemophiliacs themselves.

As your son is at such a young age the most important step would be for you or your wife to learn how to give your son factor 8 recombinant treament on a scheduled prophylaxis basis which your doctor would be able to help you with. Prophylaxis, is very important to keep you son well and prevent any internal bleeding. Then when he is capable, allow him to take up this responsibility as he will be able to understand his body far better than any doctor in due time. Prevention is everything for him.

In school, your son would be best not to participate in any full on contact sports i.e. rugby, basketball,karate or football. Other sports such as tennis or badminton would be a good pick. One thing to notice is that if he ever hurts himself heavily around the head area you should consult your haemotologist asap. Might be a good idea to let the nursery/primary school know this as well. Internal bleeding around the head area is alot more dangerous for him, especially at a young age and should be treated asap.

In the gym when he is old enough, l would suggest a combination of the use of weights in strength & conditioning exercises. Strength and conditiong, works the best for me. Exercises that concentrate on warming up and stretching off prior to compound exercises would be important as well. The use of weights (heavy or not) is contraversial and many doctors would probrably tell you its bad but in my experiance it's the best method of training in the gym. More recent literature is continuing to show it's positive effects. Doctors and physios would be more likely to advise body weight exercises and sports such as swimming which takes the weight off the joints while strengthening the muscles, which is the norm and a good starting point.

At the moment l regularly bench, squat and deadlift. So don't be put off by anyone telling you that your son isn't capable. By no means am l saying your son should be lifting 200kg when he's 18. What l mean is that it takes me a longer process of concentrating on corrective/prevention exercises and build on from that. What l don't do is to max out on my exercises like others, as you would be likely increasing the chances of injury. I also use less weight on certain exercises that put alot of direct pressure on the body, that requires the weight/bar to come in contact directly with the body i.e. hip thrusts, as l have experianced more bleeds in those exercises.

Another issue is managing your son's weight. Being overweight is a no no as this not only puts more stress on his joints but he will also need to take more units and treatment to cover himself especially when he does have a bleed. Manging his intake of carbs would be a good idea. I also want to highlight the use of vitamins as l feel that all health professions do not touch this topic. Taking vitamins are a huge asset for any haemophiliac as an additional easy method to keep themselves healthy with a good general diet of course.

Haemophilia isn't a barrier that you can learn to resolve, its more of a lifelong learning session with many barriers to cross. Again, l want to highlight that l am not a doctor and l am not offering medical advice.

I hope the best for you and your family. If you have any questions or just need an opinion. Feel free to contact me as l don't frequently visit this forum. My email is chi.w.wong@hotmail.co.uk

Cheers,

[wongseefu]

Hi Environ

First of all, congratulations on becoming a father. My first (also a boy) was born last week.

*I AM NOT AN EXPERT IN HAEMOPHILIA OR HAD ANY MEDICAL TRAINING, THIS IS ONLY FROM MY EXPERIENCE AS A PERSONAL TRAINER.*

I had a client a couple of years ago who has Haemophilia. Depending on individual severity will depend on how much training is possible, let alone advisable.

My client had trouble lifting very heavy weights due to bruising where the weight rested (hands, shoulders etc.) and also the worries over dramatically increasing blood pressure. However, his joints got progressively less painful and we stumbled across alternative training techniques as time went by. We focussed far more on mobility and stretching as well a swimming.

Although there is no conclusive link with nutrition, our research found many articles that recommended you should avoid vitamin E and fish oil supplements if you have hemophilia, as they seem to increase bleeding time by keeping platelets from clumping. Vitamin K plays a role in normal clotting and may be useful either from dietary sources or in supplement form, but research is needed in this area. Do not take vitamin K supplements without first talking to your doctor. (I'll try and hunt out the articles and i'll PM you)

The medication now is so good that there are very few activities that he would be unable to do. I would steer clear of contact sports until you know the severity of the condition.

I hope this helps and good luck. Enjoy being a father and i'll happily answer any questions I know the answers to.

A good practice for haemophiliac's is to schedule their prophilaxis treatment just before their training session. That will minimise any bruising or bleeds if they injure themselves while training . If they do, it could be that the smaller muscles that support the bigger muscle groups are really weak and that might cause a bleed. When l first started doing exercises using a bar (i.e. for benching) it was my really really weak wrists that caused bleeds. So l had to work on getting my wrists stronger. Then l had no problems. I also involve alot of my training on getting my core stronger which worked wonders to my balance (as l have arthiritis on my ankle).

I also need to be a bit more careful when l'm squatting under the bar but any normal person would probrably also bruise if their shoulders come in contact with the bar in the wrong way.

The blood pressure shouldn't have anything to do with the haemophilia.

I take vitamin k as well as fish oil regularly and l've never had any problems. I have looked at the studies and consulted my doctor but he didn't tell me there was a problem with it.

It's also common for haemophiliacs to develop bone density problems in their later lifes so you might want to take that in mind.

Hope this helps.

[Environ]

Hi Environ, l just viewed your post by chance and would like to offer you some advice on your son's condition and how it may relate to his training in the future. Whether you take my advice is purely up to you though. I am not a personal trainer but l am a haemophiliac, who suffers from severe haemophilia A since birth and l do train in the gym regularly. So l hope this may be able to offer you some useful info.

To answer your question, regular exercise is hugely important for anyone suffering from Haemophilia. Especially , the type your son suffer's from which is the most severe type. Reason being, haemophilia usually leads to many other forms of acute problems later on in life. For example, bleeds in joints (mainly ankle, knees, hips) leading to chronic arthiritis, problems with bone density, dental problems etc.

My advice would be to learn as much as you can about severe haemophila A and then derive your own understanding from other haemophiliac's experiance, as many health professions have a bad basic understanding of what haemophiliac's can and should not do. Alot of health professions tend not to touch this topic and some could cause your son additional problems without knowing. Let alone personal trainers who aim on pushing their clients to their limit on a daily basis. Your local haemohilia society would be a good step, as speaking with other haemophiliacs is the best method to gain experiance. Many of their staff are haemophiliacs themselves.

As your son is at such a young age the most important step would be for you or your wife to learn how to give your son factor 8 recombinant treament on a scheduled prophylaxis basis which your doctor would be able to help you with. Prophylaxis, is very important to keep you son well and prevent any internal bleeding. Then when he is capable, allow him to take up this responsibility as he will be able to understand his body far better than any doctor in due time. Prevention is everything for him.

In school, your son would be best not to participate in any full on contact sports i.e. rugby, basketball,karate or football. Other sports such as tennis or badminton would be a good pick. One thing to notice is that if he ever hurts himself heavily around the head area you should consult your haemotologist asap. Might be a good idea to let the nursery/primary school know this as well. Internal bleeding around the head area is alot more dangerous for him, especially at a young age and should be treated asap.

In the gym when he is old enough, l would suggest a combination of the use of weights in strength & conditioning exercises. Strength and conditiong, works the best for me. Exercises that concentrate on warming up and stretching off prior to compound exercises would be important as well. The use of weights (heavy or not) is contraversial and many doctors would probrably tell you its bad but in my experiance it's the best method of training in the gym. More recent literature is continuing to show it's positive effects. Doctors and physios would be more likely to advise body weight exercises and sports such as swimming which takes the weight off the joints while strengthening the muscles, which is the norm and a good starting point.

At the moment l regularly bench, squat and deadlift. So don't be put off by anyone telling you that your son isn't capable. By no means am l saying your son should be lifting 200kg when he's 18. What l mean is that it takes me a longer process of concentrating on corrective/prevention exercises and build on from that. What l don't do is to max out on my exercises like others, as you would be likely increasing the chances of injury. I also use less weight on certain exercises that put alot of direct pressure on the body, that requires the weight/bar to come in contact directly with the body i.e. hip thrusts, as l have experianced more bleeds in those exercises.

Another issue is managing your son's weight. Being overweight is a no no as this not only puts more stress on his joints but he will also need to take more units and treatment to cover himself especially when he does have a bleed. Manging his intake of carbs would be a good idea. I also want to highlight the use of vitamins as l feel that all health professions do not touch this topic. Taking vitamins are a huge asset for any haemophiliac as an additional easy method to keep themselves healthy with a good general diet of course.

Haemophilia isn't a barrier that you can learn to resolve, its more of a lifelong learning session with many barriers to cross. Again, l want to highlight that l am not a doctor and l am not offering medical advice.

I hope the best for you and your family. If you have any questions or just need an opinion. Feel free to contact me as l don't frequently visit this forum. My email is chi.w.wong@hotmail.co.uk

Cheers,

Thanks very much for your post. I do appreciate it. I am a personal trainer and a strength and conditioning coach too. I think my original post was to seek reassurance that my son would be able to work out and lead an active, physical life if that's what he wants to do.

He's on prophylaxis, which both my wife and I are trained to give him. Unfortunately, he has an inhibitor at the moment, which we are fighting and, which, I hope will be resolved shortly.

I am acutely aware of the lack of knowledge in the area of exercise and haemophilia, which is why I posted in this forum. I want to reach other people who are familiar with this area. I fully want to him to use exercise as a means of minimising the risk of bleed by having strong joints and I want to teach him from an early age that weight control is an important without making too big an issue out of it.

I am educating myself about haemophilia and have read a couple of books. There is a very strong haemophilia society here, and it's state funded. They hold conentions and conferences throughout the year and our haemophilia clinic is only a short drive away.

Again, thanks for you input. The bit I took most from your post is that your haemophilia has not prevented you from lifting. Of course, if he doesn't want to lift weight and prefers other forms of physical activity, I will be fine with that, but I would like him to understand the benefits to him from lifting weights appropriately.

[andyselv]

Hello,

Sorry to hear about your son, Haemophilia is a journey going through childhood and the teen years. The better educated the parents are the better quality of life the child will have. Of course working with your local Haemophilia Treatment Centre is key as well.

All that aside. I have Severe Haemophilia A with Inhibitors, I'm currently 24 years old. For the last 2 years I have been a Personal Trainer and health coach. I specialize in weight loss and muscle gain.

4 years ago I lost 35kg in body weight and gained 10kg in muscle. It improved my life massivly and cut my bleeds by 75%. From age 13-20 i was confinded to a wheel chair, but health and fitness turned my life around. From that stemmed my passion for fitness and made the profession change from IT to PT!!!

If there is anything you need to know, or just general questions I'm more than happy to help brain strom with you. Obviously I'm not able to give clinical advice but I can help direct.

This also goes for any of the guys on this forum that have Haemophilia.

[Cobblers39]

Hello,

Sorry to hear about your son, Haemophilia is a journey going through childhood and the teen years. The better educated the parents are the better quality of life the child will have. Of course working with your local Haemophilia Treatment Centre is key as well.

All that aside. I have Severe Haemophilia A with Inhibitors, I'm currently 24 years old. For the last 2 years I have been a Personal Trainer and health coach. I specialize in weight loss and muscle gain.

4 years ago I lost 35kg in body weight and gained 10kg in muscle. It improved my life massivly and cut my bleeds by 75%. From age 13-20 i was confinded to a wheel chair, but health and fitness turned my life around. From that stemmed my passion for fitness and made the profession change from IT to PT!!!

If there is anything you need to know, or just general questions I'm more than happy to help brain strom with you. Obviously I'm not able to give clinical advice but I can help direct.

This also goes for any of the guys on this forum that have Haemophilia.

Hi Andyselv,
My son (13) also has sev. haemophilia with inhibitors, (novoseven on demand) he has a lot of bleeds and was wondering regarding exercise. At the mo he has a bleed which i think is in his Left calf/tendon as he cannot place his foot flat as his leg is "tight". would cross traing for a short while a day be of help and can we increase this to help develop?? He is under developed in my opinion due to the amount of time he is bed bound due to leg "bleeds"??
My wife is experienced re. Haemophilia as her older son (22) has Severe haemophilia A (profilaxis with factor 8) so lived with it for the last 20 odd years..
hope this makes sense..
any advice would be appreciative as hospital faff about a lot!!
regards
Andy

[sutto89]

Hi Andyselv,
My son (13) also has sev. haemophilia with inhibitors, (novoseven on demand) he has a lot of bleeds and was wondering regarding exercise. At the mo he has a bleed which i think is in his Left calf/tendon as he cannot place his foot flat as his leg is "tight". would cross traing for a short while a day be of help and can we increase this to help develop?? He is under developed in my opinion due to the amount of time he is bed bound due to leg "bleeds"??
My wife is experienced re. Haemophilia as her older son (22) has Severe haemophilia A (profilaxis with factor 8) so lived with it for the last 20 odd years..
hope this makes sense..
any advice would be appreciative as hospital faff about a lot!!
regards
Andy

hey mate I suffer from severe hemophillia as a young kid growing up I spent a lot of time bed ridden from bleeding episodes. I'm now 23 and through physical exercise I have defiantly got my hemophillia under control I've done a lot of weight training, high and low*intensity and even amateur boxing. my point being defiantly don't listen to all the hype that comes from the medical side of it and get him training and in the right mind set from a early age with proper treatment diet etc you can live a very normal healthy lifestyle.

[ajaywk]

hey guys .. my name is aj and i m from India ... i am suffering from haemophilia A .. I am 15 years old , I weight only 90 lbs .. i need to gain muscle and strength so that i could prevent bleeding in various joints ... i dont know how to start my workout plan as i am new to it ,can someone help me out .... i am afraid that starting with heavy exercises could affect my health so please help me - i am sick of hearing people saying that i am too skinny and teasing me .... so guys please help me - thanks in advance ...

[TheHemo]

I’m a severe factor 9 hemophiliac, the bleeds did a number on my knees and has caused a lot of discomfort. I am 24 years old now and have been working out for under a year and when I started I was 145lb . Now I’m 175lb and I’m benching and squatting over 200lb. Now my knees are barely a complaint for me now. Start him off low weight to build the muscle around the joints and just be patient and listen to your body. I barely even have to factor now, only when I get hurt. Everything should be good try not to worry too much

[KyleAaron]

An old thread, from when the rules were laxer.

This is a medical question and doing it wrong could actually kill someone. Ask a relevant medical professional.