Dealing with Hemophilia
What doctors say...
There is no known cure for hemophilia yet, which is why the old adage of "an ounce of prevention is better than a pound of cure" plays a great role. On the first signs of bleeding, bruising or swelling, immediately:
- apply cold compress to the affected area.
- for external bleeding, wash the wound and apply pressure.
- wrap the affected area with bandage - not too tight though.
- elevate the swollen limb for better blood circulation.
- Avoid moving about as much as possible.
Sounds normal doesn't it? Yes it does, but not to a hemophilia patient. These first-aids can actually prevent the injury from aggravating. Otherwise, an unbearable pain would visit in a few hours and you might find yourself in the hospital.
No I'm not talking about the band. I'm talking about one's savings account being squeezed into small bottles or vials. At the moment, there is no permanent cure for this disorder, but infusion of Factor VIII can hasten the healing process of a bleeding.
Small wounds can be treated normally just as an average person does it. However, if we're looking at large, gaping wounds or internal bleeding then that's where infusion comes into play.
Hematologists calculate the amount of Factor VIII that will be infused based on a patient's age, weight, laboratory tests and how severe the injury is. When that is settled, then you're off to being admitted to a hospital anywhere between a couple of days and a couple of weeks.
Although these too can be avoided by seeing your hematologist and getting an outpatient infusion on a regular basis. Either way the process can both be very expensive.
The ounce of prevention
For hemophilia patients like me, living a physical and athletic life can be a little difficult. But there are some other things that you can turn your attention to, like:
- Music. Learn to play an instrument. You may not be the next Hulk Hogan but you may find yourself ranked with Elvis Presley.
- Arts and Crafts. If you have the skill, patience and time, try to engage yourself in a hobby you've always wanted. Perfect your skills
- Join clubs. Be with people who share your interests. Talk to them and gain knowledge as you share them.
Now here are some activities that I suggest you try to avoid if you're a hemophilia patient:
- Pro Wrestling. The money you earn would only go to medical bills.
- Boxing. If you're fast enough not to be hit at any given match, by all means go ahead. But then again, the training itself can be very rigorous and may get the better off you leaving you injured weeks before your next match.
- Mixed Martial Arts. Need I say more?
Please don't get me wrong but you also have to move those muscles. Exercise regularly and strengthen them to prevent yourself from being injured easily. Of course we are free to engage in any activity that we like but always remember not to go beyond your limits.
The bottomline is...
Just stay happy. Try to find good ways of making yourself in high spirits. Don't stress yourself too much. In my experience, seldom do I have episodes of hemophilia whenever I'm pleased and satisfied -- whether at home, at work, with friends, my hobbies, etc. This blood disorder always manifests itself physically, but sometimes (and more often than not) it can be triggered psychologically. When sick, the average person can quickly recover if he or she is happy about something. If it works with others, it will definitely work with anyone.
Wouldn't it be better if you spend your time and money on things that would make your day, instead of spending those inside the hospital or on medical bills? Relax. Have fun.
In analogy, hemophilia patients and normal people can be likened to glass jars. Both are capable of holding water and, capable of being designed and decorated. But some are fragile and can easily be broken.
If you have a relative, friend or anyone who has this blood disorder, don't forget to show them your support. Make them feel loved and cared for. This should bring them more than a smile. It will ease the pain they suffer from -- both physically and emotionally.
I should know. I have hemophilia too.