Through the eyes of survivors and family members, BAD BLOOD chronicles how a “miracle” treatment for hemophilia became an agent of death for 10,000 Americans. Faced with evidence that pharmaceutical companies and government regulators knew the product was contaminated with deadly viruses, the hemophilia community launched a powerful and inspiring fight to right the system that failed them and to make it safer for all.

Produced and directed by two-time Emmy Award winning filmmaker Marilyn Ness, BAD BLOOD honors the memory of those who were lost.

To learn more visit www.badblooddocumentary.com

Have you ever had a dream that you just knew you had to fulfill?  Something you just knew your life would not be complete without?  So it was for “Brownie”, a thirty-something airline pilot living (and flying) with hemophilia.

Brownie started flying at the ripe old age of ten.  His first flight lesson recorded in his logbook is dated 1986!   He even remembers how he had to sit on phone books to see out the window, and his flight instructor had to strap blocks onto his feet so he could reach the pedals for his lesson.  He says, “Almost since I could talk, I have talked of becoming an airline pilot.  I waited until I was ten because that was when I could help out enough around the house to earn enough money for a flight lesson!”

His dad was a private pilot and he says his parents were a huge positive influence in his life.  “They taught me from a very young age, that I could do whatever I set my mind to,” he states.  He says he has been told that he used to fall asleep in the back seat of his father’s plane before he was old enough to know what was going on.  He and his dad still share a love of flying today.

When asked if his having hemophilia got in the way of his dream of flying he said, “My hemophilia has been a significant hurdle in becoming a pilot and continues to provide challenges in my career.  I have never been as concerned about my hemophilia as the FAA is!”  Each year he has to pass a flight physical along with all other commercial pilots, the only difference is, he also has to obtain a note from his hematologist stating that he is healthy enough to fly.  He says, “I have had to work harder to get my medical certificates than the average pilot, and this has made me more appreciative of my opportunities.”  Brownie infuses prophylactically to avoid any problems with his flight schedule and he always makes sure that he has factor with him when he flies.  “There is no time for a bleed when you are running on such a strict time schedule,” he says.

As if flying with hemophilia wasn’t enough, Brownie is also an avid hunter and fisherman, even though as he replies, “my wife probably wishes that my dad had never exposed me to the outdoors!”  Depending on the season, he is either hunting or fishing on his days off.  He has been tournament fishing since about 1993 and hunts mule deer, whitetail deer, waterfowl, turkey and pheasant on his families’ ranch in Nebraska.  He also hunts near his home in Kentucky for waterfowl, deer and turkey and in Texas for dove and quail.  He says, “Hunting involves a lot of walking and hiking over some treacherous terrain, while fishing requires standing for up to nine hours straight.   The joint pain gets harder and harder to overcome, and I am sure that at some point I will have to slow down – but for now I figure I better get it done while I still can!”

Many dreams have come true for our friend “Brownie”.  When asked if there was ever a time when he thought his hemophilia might get in the way of achieving his dream he said that he actually quit flying for a while when he went to college.  He assumed that the FAA wouldn’t allow him to get the medical certificate needed to be a pilot.  He nearly gave up his dream and began studying agriculture management at Texas Tech, but when he learned he could get his medical certificate he went to flight school in Oklahoma to finish his flight training.  “Never let anyone tell you what you can’t do,” he says.  “There were times that I thought it wouldn’t be possible, but determination and perseverance pay off.”  Brownie let his dream lead him to the skies and he is flying high with hemophilia!

Twenty –one year old Andrew Schnitker has always loved football and hockey; and even though he has severe factor VIII hemophilia, these sports will continue to be a huge part of his life.  That’s right, because even though Andrew can’t play these sports due to two target knee joints, he has high hopes of becoming a sports broadcaster after his graduation next December.

Andrew grew up in Dallas, Texas, and also has a brother who has hemophilia.  His mom knew she was a carrier because her dad had hemophilia, so she knew Andrew would have hemophilia before he was born.  “The thing I like least about having hemophilia is having target joints; both of my knees are bad. I had a port a cath from age 5 to 13, and started prophylaxis then since I started developing target joints before I was five because I had an inhibitor,” he recalls.   Andrew’s parents kept up his prophylaxis and he eventually beat his inhibitor.

When he was a boy, Andrew loved to watch the Dallas Cowboys football games and remembers watching the Dallas Stars hockey team win the Stanley Cup with his dad.  He really wanted to play, but was never allowed to.  “Mom and Grandma wanted to keep me safe,” he says.

Since Andrew has always loved sports, and has been acting since he was five years old, he has found a way to combine the two into a career.  He has been studying communications at the University of Texas in Austin, and hopes to someday have a job in the sports field.  You see, there is more than one way to have a career in sports; Andrew hopes to possibly be a sports writer, editor, producer or reporter.  He says, “I love sports, it’s something that brings people together, and to see the drama unfold is a thrill.”

Andrew is the president of his fraternity and says he has spent the last four years teaching all of his fraternity brothers about hemophilia.   He says, “I would rather have people ask questions and learn about my bleeding disorder than try to hide it or be embarrassed by it.  It is a disorder that not a lot of people know about and I want to clear up their misconceptions.  I would never want to use this disorder as a crutch.”

Andrew currently does a Radio show on campus.  “I’ve been the sports director on 91.7 KVRX for a year.  I do the Longhorn College sports talk, it is an FM spot Tuesdays at 7:00PM,” he explains.   He started out as a guest on the show, and finally was given a show of his very own.  He jokes, “I just kept volunteering until they gave me my own show!”  He says, “I have also done an internship with ESPN radio.  I love it because you get to create a character.  You can show up in athletic shorts and a T-shirt, it is such freedom- so enjoyable.  It’s a stress release for me.” He says he is not sure what his eventual job will be, but for the summer he has an internship with the CBS affiliate, doing sports writing, producing editing, and maybe even some reporting.   He is excited about his future and says he can’t think of anything better than to get paid for doing something you love.  He even thinks he would be willing to move anywhere, just to get a job in sports.  He says, “It’s funny, when I was in school, I hated English, but loved geography and history.  Now I may be a sports writer!”

Andrew’s advice to other kids with hemophilia is, “Don’t put yourself in a box that says, “I am a Hemophiliac!” It does make you unique, but you just have different challenges.  Embrace it, but don’t let it change who you are.  And Andrew’s advice about going to college: “Choose a major that you’re interested in, or really like.  College will provide some of the best experiences of your life…learn as much as possible and get involved at your school.  Everyone in college wants to meet new people and learn about different cultures, so jump in and embrace it!  The more learning and growing you do during your college years the more likely you will be to find the job you really want!”  That sounds like good advice from a twenty-something who has it all together and will soon be reporting from the world of sports.

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