My name is Jonathan and I have severe Hemophilia A. I am 31 years old, married to the love of my life, have four kids, and I am a Financial Advisor. I have a real passion for the hemophilia community and am constantly looking for ways to give back. My wife and I started a Non-Profit Foundation called “Hope for Hemophilia,”and are constantly working on ways to reach out to others in this growing community.

This past year we started a web site designed to help connect the community even more by utilizing social networking technology. The site is www.hopeforhemophilia.net. We hope that ultimately this will become THE web site for the hemophilia community.  This site will ultimately help people living with hemophilia to gather and develop information through life-giving relationships. We envision this being the main point of gathering for the hemophilia community because we are so spread out geographically.

Over the past couple of years, I have had the opportunity to travel and speak at many different hemophilia related events. As I have traveled, I have seen a wide variety of approaches to individual care, not so much on the part of HTC’s, but rather variety in terms of what individuals themselves are doing in  managing their own care. One of the first questions asked is “Do you prophy dose?” Which is slang for “Do you treat prophylactically?”

I have heard many different thoughts and ideas about prophylactic treatment, versus on-demand treatment, from nurses, doctors, manufacturers, home health agencies, and caregivers. However, I would like to take a moment and offer a few thoughts from one patient’s perspective. Please keep in mind, I am assuming that your Doctor or HTC has recommended you as a candidate for a prophylactic regimen.  I always recommend that you seek the professional advice of your health care provider before making any changes to your treatment.

Many people focus on the inconvenience of infusing, but what about how convenient it really is. Compared to what was available 10 years ago, we have a very streamlined process.  Most of us are VERY fortunate that we have factor readily available, and given our circumstance, I think it is worth taking advantage of.   If your doctor and HTC agree that you are in fact a candidate for prophylaxis, then by all means, do it!

Most people don’t realize that EVERY time you bleed into a joint, it damages and therefore weakens your joints. This is important because each time you don’t infuse you are placing your future health at risk. Steven Covey, a well respected author, says that we often address the urgent rather than the important. This is interesting when discussing this concept because for those who only treat on-demand, I believe they are letting the urgent (the activity, or the bleed) become the thing they pay the most attention to, rather than paying attention to the important (prophylactic treatment and/or joint health and preventing bleeds). You see, when we don’t treat regularly, we end up with damaged joints that can NEVER fully recover. Something is taken from you that you can’t regain! Something is PERMANANTLY removed from the health of your joints.

What does this mean in “real” life?  As I said earlier, I have four beautiful children! I have had two ankles fused and 6 surgeries to correct joint damage. As you can imagine, all of this was done during times of potential promotions at my job, during babies being born, during holidays, etc. At times, it has caused me to be limited in my activity and involvement in my children’s lives. I don’t share that as a sob story, only as a realization that life activities go on, whether you are able to or not. There are many things that I have wanted to do over the years that I have not been able to do, because of  limitations due to joint damage. Probably the most impacting, is not being able to wrestle with my kids the way I always dreamed of. This has taken a huge emotional toll on me directly. It has taken quite a bit of encouragement from loved ones and some professional counseling at times, to overcome.

I am a financial planner, as I said earlier, and many times people start off with a great plan in place. They know they would like to retire at 65. They start a plan when they are in their 30′s and start dreaming or imagining what they will do once they retire.  Most often, what happens between someones mid 30′s and their mid 50′s is amazing. They realize that the urgent took presidence over the important. They didn’t stick to the plan. They didn’t save a little along the way. They didn’t do what they COULD have when they had the opportunity.

I am concerned that during the transitional periods of patients taking treatment into their own hands, they stop treating prophylacticaly. Many of the kids in the community today grew up on some form of prophylactic treatment and as they are growing up, I believe it is imperative that we as a community continue to help them understand the reasons and benefits of keeping their joints healthy. I know of patients today who had perfectly healthy joints when they were young and are graduating college today with target joints. So when they are getting ready to start their careers or are getting married they are already having to deal with chronic bleeding.  In a time in their lives when they should be the most active, they simply have to slow down. This just doesn’t have to be this way.

Many HTC staff members promote prophylactic treatment as a way to help patients enjoy a relatively healthy and normal lifestyle.  Much like the financial planning example, though sometimes people start out with great intentions, then the urgent takes precedence over the important and it effects their lifestyle. If we are not careful we will have a community full of  “once upon a time” patients with stories of high school successes, and career failures.

I believe that the future is bright for our community. Easier treatments will evolve, but for the time being, Carpe Diem (Seize the day!) Set yourself or your child up for success. If they need encouragement or help, let someone in the community know. There are more and more of us that are older, that can act like big brothers and help them understand the importance of the little decisions along the way.  Help yourself, friends, children, patients understand the reasons behind infusing regularly. I believe that so many of the patients who are in transitional periods of life, stop infusing or following what they were told because as children they were told “you must treat regularly, rather than taught why they should infuse regularly. However, it is imperative as they grow older that we, as a community,  help them understand the “why” behind prophylaxis.

Hemophilia doesn't keep this "Ace" down

Fourteen year old Michael Schnitker is a boy on a mission, a boy with plenty of determination.  He is a boy who loves baseball, and doesn’t let his hemophilia keep him from playing the sport that he loves.   He does remember a time when he really wanted to play football, but soon learned that baseball was a much better sport for him.  He says, “I really got interested when I saw the Little League World Series on TV.”  He started playing T-ball at the ripe old age of 5 and has enjoyed many seasons since then.

Michael plays outfield and second base, and his favorite part of baseball is fielding.  He especially enjoys how good he feels about himself when he makes a good play.  He has attended hemophilia camp a couple of times, but for the last few years has opted to attend baseball camp instead, an option that seems to have paid off for him.  He just finished a successful season with the North Garland Indians and will be trying out for the high school team at Sachse High School in Sachse, Texas in the spring.

Many parents may be concerned about injuries from playing a sport such as baseball if you have hemophilia. However, infusing regularly via prophy allows Michael to live out his sport.  Michael reassures us that he has really had very few injuries.  “Not too many,” he says, “a few bruises, and one time I hurt my eye.”

Safe! Michael wears out the base pads for another hit

Michael is referring to an injury he had last year when he was playing second base and the third baseman threw a ball to him; the sun was in his eyes and since he couldn’t see, the ball hit him in the eye.  A trip to the ER and a few extra doses of factor and he was good as new.  Michael now wears sun glasses to protect his eyes, a good idea even if you don’t have hemophilia.

There is always the potential to get hurt, he says, but the benefits of baseball far outweigh the dangers.  I asked Michael what he thought he had gained from baseball and he said, “New friends, and I get to keep busy and out of trouble!”  As I talked to him I could also tell that he had gained confidence in himself, a kind of confidence that you just can’t find.  By Michael’s life experiences playing baseball, his self-confidence had grown.  If your child doesn’t like baseball, help them to find something that they are passionate about.   Their self-esteem will rise and they will feel like they really have a purpose in life, a purpose greater than their hemophilia.

Luckily infusing regularly before playing kept this injury from being life threatening

When I asked Michael what advice he would give to parents of kids who have hemophilia he said, “Don’t be too protective.  Let them try things, within limits of course.”  And his advice to kids with hemophilia who want to play baseball, or any other sport for that matter, “keep trying, even if you miss the ball – get ready for the next play!”  Michael Schnitker is learning good lessons in baseball, and good lessons for life!  Get ready for the next play!

Below is our first blog post from a mother – we hope you enjoy this entry about Kyle – future second baseman of the Texas Rangers!

Baseball…As American as apple pie, right?  But, until recently, most hemophiliacs were discouraged from playing the sport, told the risk outweighed any possible benefits.  Well, tell that to my seven year old son, Kyle, who despite having severe hemophilia, lives for the game of baseball.  He not only watches baseball for fun, but he analyzes every pitch, throw, and base running effort by every player.  At the age of 4, he started playing on the t-ball team, and this year, has made it up to coach-pitch.  He loves to hit, but also loves to play second base.  We have had some parents ask us about our decision to let him play baseball;  it was actually an easy decision.  Allowing him to play a team sport was important to us, and we knew football was out of the question!  As he has gotten older, he has asked us why everyone doesn’t go to school with bandaids on their hands or arms, but being a part of a baseball team allows him to be like all the other kids.  He hits, catches, and runs the bases just like everybody else.  Looking out onto the baseball diamond, you wouldn’t be able to tell which one is the hemophiliac.  Baseball has allowed him to develop his strength and coordination, but more importantly, given him the confidence to try new things, and that hemophilia is only part of his life – we are not going to let it rule his life.  He knows that in order to play baseball, we have to stay on his regular prophylaxis schedule, to prevent any possible bleeds.  He won’t be able to play pitcher, and catching would be too hard on his knees.   We are so thankful that his coaches have been so understanding of that.  They are so supportive of him. He doesn’t get any preferential treatment, or pointed out that he can’t do something.  He is just one of the boys on the team! 

When we see his face after getting an out at second base, or getting a big hit and scoring a run, we know we have made the right decision.

Kyle playing some serious second base!

We have started to talk a lot on sweetaffliction.com about how important it is to incorporate fitness into your daily life when living with hemophilia. Well just as important as it is to keep your body strong as a hemophiliac, it is just as important to keep your mind strong and healthy. Below is an article by Kimberly Moore on this subject. Kimberly Moore is the owner of Custom Fitness, a fitness consulting and personal training business. She has spoken to numerous companies and organizations and is the author of The Healthy Lifestyles Program. You can contact her to speak to your company or organization by calling Custom Fitness at 214.348.7050. E-mail your fitness questions or comments to mooremotivation@aol.com.

FITNESS FOR YOUR BRAIN

Regular exercise is essential for a lean, healthy body. Did you know it is also crucial for maintaining a healthy brain? As early as age 30, you literally start to lose your mind due to a loss of brain tissue. The brain is the most complex part of your body, therefore requiring the most energy. It is made up of approximately 100 billion nerve cells, or neurons, and other tissues. The brain controls all of your bodily functions ranging from life support systems such as breathing and keeping your heart beating, to your five senses, emotions, and the ability to learn new things. Therefore, it is important to keep it healthy and strong throughout your entire life. 

Routinely participating in both aerobic exercise and strength training can slow brain tissue deterioration and enhance mental function by 20 – 30%. How does this work? When your heart rate elevates during exercise, blood flow is increased, delivering more oxygen and glucose to the brain which is needed to function properly. Exercise also enables you to form new circuits between nerve cells, allowing you to think more clearly, improve your memory, and increase the speed of your reactions to stimuli. 

In addition to physical exercise, it is also important to give yourself a mental workout each day if you want to preserve brain power. Take time to do word games like crossword puzzles or acrostics. Memorize Bible verses or your favorite poems. Read books that challenge your vocabulary or encourage you to try a new hobby. Activities such as writing in a journal, learning a foreign language, or taking music lessons all require thinking and will challenge your brain, keeping it mentally fit. 

Just as the foods you eat affect your body’s shape, they also affect the shape of your mind.  In a study published by the American Journal of Clinical Nutrition, researchers tested people between the ages of 65 – 90 and discovered that those with the greatest ability to memorize words and perform mental arithmetic included the most fruits and vegetables in their diets. Coincidentally, the same group of people ate the least amount of saturated fat. 

Vitamins and minerals play a role in brain function as well. The B vitamins are essential for healthy brain and nerve cells and the transmission of nerve impulses. They are found in whole-grain foods (bread, rice, pasta, and fortified cereals), meat, poultry, fish,  legumes, eggs, milk, nuts, vegetables, and fruit. Iron is needed to carry oxygen to the brain cells and is used to make neurotransmitters to regulate your ability to concentrate which is crucial to learning. The best sources of iron include lean beef, whole grain cereals and breads, raisins, and legumes. 

Managing your stress also has an impact on your brain’s health. When you maintain a high stress level, your adrenal glands release the hormone, cortisol. This hormone has a very toxic effect on the memory center of the brain which can lead to memory loss. Cortisol blocks the uptake of glucose to the brain cells, a vital ingredient for the cells to function. Neurotransmitters, the chemicals that allow messages to travel from one cell to another, are also blocked by this hormone. Therefore, be sure to take time for relaxation each day to keep your stress and cortisol levels under control.

Remember that when you take time for regular exercise, healthy eating, and relaxation, you are keeping both your body and brain in shape so you can be physically and mentally fit no matter what your age. 

POSTED BY ANDY

I know that I am just a little voice out here but even if the people who visit this website sweetaffliction.com would commit to achieving an optimal weight, exercise, and diet, that alone can make a big impact! If all the children and adults living with hemophilia could maintain some kind of fitness routine they would have healthier joints and if they are dealing with problem joints, even a moderate amount of fitness along with factor dosage can help rebuild muscles around the joint areas and minimize future bleeds. Think about how much better you would feel with strong healthy joints! I am living proof that eating right and adhering to a fitness program with strict discipline can change your life if you are living with hemophilia!

I know fitness is the answer because I can tell you that I am healthier than most people living without hemophilia! I remember that when many of my hemophilia friends found out they had HIV in the 90′s most of them just figured they would die. I always thought that mentality was crazy and I chose to start getting more serious about what I ate, having a positive outlook and most importantly developing a work out regiment with regular cardiovascular exercises. Yes I had a bad ankle target joint to worry about but I still stayed true to the physical activities that worked for me – mostly mountain biking and fast walking. Did you know that if you will just commit to parking in the furthest parking place, taking the stairs instead of elevators and walking whenever possible you will be amazed at how much better shape you can be in by incorporating fitness into your daily routine. Heck, just think about how much power walking you can do by going to the Home Depot or the mall. You can get exercise anywhere by just walking like you are in a hurry and you will look important while you are doing it!

The great thing about fitness is that it is a sure thing. There are many things in life I can tell you to do that are not a sure thing. I can tell you to work harder but that does not necessarily mean you will make more money. I can tell you to improve your appearance but that doesn’t mean you will get more dates! You can do all the things your Hemophilia Treatment Center says but that does not guarantee you will not have any problems. But I can promise you this, if you are committed to it you will get results from a fitness program! How much success you achieve is up to you. No matter whether you are rich or poor, tall or short, skinny or fat – with proper training, diet and good clean living your body will become your temple! 

Start working out now! Begin by just walking. Then try some light weightlifting or swimming. Get your helmet on and try some mountain biking. Make sure you factor up to prevent bleeding and get better results. And always go over your fitness plans with your Hemophilia Treatment Center staff before starting  - especially your physical therapist. I guarantee you will start dropping cumbersome weight and building stronger muscles and most importantly joints. You will have more energy and begin to feel better. In these uncertain economic times this is the single best thing you can do for yourself and your children. After all, if you do not have your good health and strong body, what do you have?

POSTED BY ANDY

Fitness for Life That Also Builds Better Veins!

 I want to encourage you as an adult or child with hemophilia to get fit.  I have always been passionate about fitness and I guess it goes back to the fact that I could not play sports when I was growing up in the 70’s.  I wanted to at least look the part and be stronger than my friends to help my self-esteem.   I wanted them to think that even though I did not play sports that I was at least strong and fit.  Ok, so what are the best things to do and what have I done.  It all started with swimming and biking.  My dad got me a bike when I was about three years old and from then on I was “bike crazy”.   I truly believe it helped me to not develop a target knee.  Think about it, I am 43 yrs old, severe f-8 and was not on prophylaxis, like I am today, and to make things even worse was on Cryoprecipitate till I was 18yrs old too and my ankle is my only target joint.   I am truly a small miracle with the few bad joints I have today.   And, both swimming and biking have helped to strengthen my ankle. 

In my opinion, you need to focus on low impact strengthening exercises to build your muscles.  Remember, a strong muscle bleeds less and heels faster!!  I will tell you with the triple H’s it has truly saved my life to stay fit.  And at 43, I am still able to leave most of my friends on the mountain bike trails that do not have hemophilia or any other excuse except just being lazy.  As an adult, I would encourage you to really build around the good joints you have.  Everybody has specific issues and the important thing is you do not make your joints worse but better. 

If you are a parent, you really need to be active with your child!  It will be very rare if your child is a fitness nut like I am on his own.  I will say most children are an offshoot of their environment.  If you are not into fitness they probably will not be either.  I know with my two and a half year old son I am already teaching him about exercising and it will be a way of life for him.  It is that much more important for a young person with a bleeding disorder.  In my opinion, the advent of video games has really taken away the spirit of exercise out of children’s daily routine like when most of us were young. 

I will tell you there are so many positive things that being in shape will do for you as a bleeder.  For instance,  If you are HIV + or HEP C+, when you raise your heart rate that in turn stimulates endorphins which help your immune system and will just give your body a stronger foundation to work with.  If you are both, same thing happens.  As my doctor always tells me good clean living has served me well and you will always see people do a lot better that are co-infected that are in shape.

Andy’s routine exercises to keep in shape:                

1.       At least once a week I hit the mountain bike trails for a hard ride through all types of technical stuff that challenge my whole body but really is very easy on all my joints, other than give them a good muscle and awesome cardiovascular workout! (that is if you don’t wreck and I always wear a helmet) If you are a parent try to get your kid on a bicycle early and do it with him when he or she is older.   If you are an adult there are so many types of bicycles you could start with but the great thing is for the most part it is a non weight bearing exercise so that is what makes it great for our joints!!

2.       I try to hit the gym at least once or twice a week for about a 45 minute workout. I would add, I have been working out for years and the best thing you could do is hire a few sessions with a personal trainer and first talk to your physical therapist at your HTC if you have one.  Tell both of them you have hemophilia and need exercises that build strength without damaging any of your joints. My workouts consist of:

A. lots of pull ups (awesome exercise and not hard on the joints and you get three exercises all in one.  If you can’t do pull ups, start with lat pull downs)

B. Inverted leg press machine and do high reps and low weight. (15-30 reps with about 3-4 sets)   Also it’s a great way to work your ankle and many times it is easier on it than most exercises but it is not the best if you have bad knees. 

C. Hamstring machine is also a great one and most people can do this one and it is not very hard on the knee at all, it helps stabilize your whole joint and will burn, burn, burn!!!

C.  I do about three bench press sets and either the incline bench press machine or flat  bench.  If you had minor elbow problems you could do bench flys with a lighter weight and that might take some stress off the joints. 

3.       I walk a lot and very fast walking.  Best solution is to get a Fox Terrier like I have because she definitely sets the pace for me which is as fast as you can walk.  You are your own gauge as to what you can do but most guys with hemophilia can walk more than they do.  It’s a great way to drop weight and build muscles somewhat and a great thing to do with your family and pets.

4.       I also do a lot of pushups of all kinds.  My favorite right now is doing them with the”Perfect Push Up’s” (perfect pushup.com).   Pushups are awesome and you can do them anywhere but I would recommend doing them with some type of push up bars to make it easier on your wrist!!

5.       Building your core.  Everyone can own an exercise ball and almost everyone can build their core and much more with the ball at home or at the Gym.  I really like having these at home so I can regularly do my ball exercises and pushups.  No matter how bad your joints are there is probably some exercises you could do with the ball. Very easy on the joints!!  http://www.qfac.com/gear/balls2.html

6.       Building your grip which will give you great veins too.  I use my “gripprotrainer” grips often and they make them in 3 different strengths.  These round hand grips are awesome for building forearms/grip and a bonus of building great veins.  If you are a hemophiliac you know the importance of veins, they are your lifeline!  Go to www.gripprotrainer.com to order some and you too will start building veins for life.

7.       Lastly, in the summer I do some swimming and used to swim on a team. Swimming is really about the best exercise someone can do but is hard to do on a regular basis throughout the year.  It’s a great thing to teach kids to do at a very early age.  I cannot tell you how many kids I find at camp every year that cannot swim or cannot swim very well.  If you have bad joints or even if you don’t, swimming or some type of water exercises are really going to be great!

I want to conclude that these are the exercises I do for me and I urge you to check with your doctor or physical therapist to make sure you are doing the best exercises for you and your joints.  The main thing is to get on a schedule and do not veer from it.  Be disciplined and you will notice results.  Good luck and email me anytime if I can be an encouragement to you! Andytag@aol.com

POSTED BY: DAVID