Hemophilia is defined as a medical condition in which the ability of the blood to clot is severely reduced*, causing the sufferer to bleed severely, even from a slight injury. This is a rare disorder in which the blood does not clot normally because it lacks sufficient blood clotting proteins causing an individual with hemophilia to bleed longer after an injury than an individual with normally clotting blood. Keep in mind that minor cuts aren’t usually much of a problem. The greater health concern is deep bleeding inside the body.
Hemophilia is an inherited disorder and while there is no known cure*, with the proper treatment and self-care, most people maintain active, productive lifestyles.
So, what do these people with hemophilia want you to know?
1. Hemophilia A is also called classic Hemophilia. It is the most common of the disorders and occurs in about eighty percent of those diagnosed with hemophilia. Individuals with this type of Hemophilia suffer from moderate to severe symptoms.
2. Hemophilia B is also called Christmas Disease is less* common and occurs in only about twenty percent of those diagnosed. Stephen Christmas was the first patient, in 1952 to be officially diagnosed with the disorder and henceforth the namesake for the disorder.
3. Hemophilia is caused by a genetic mutation in genes and proteins. The bleeding symptoms arise because blood clotting is impaired.
4. We already know that men and women each have 23 pairs of chromosomes with women carrying two X chromosomes and men carrying one X and one Y chromosome. Hemophilia is linked to the X chromosome and therefore is passed on from the mother to the son on the X chromosome.
Furthermore, more often than not, girls are the carriers of the disorder and rarely develop the symptoms of hemophilia. While not impossible, it is highly unlikely that a girl will develop hemophilia as she would have to receive affected X chromosomes from both of her parents.
5. There are symptoms to watch out for to be prepared for a diagnosis of Hemophilia –
- Unusual and/or several bruises
- Unstoppable nosebleeds
- Excessive bleeding from a minor injury
- Painful or swollen joints
- Blood in the urine
There are Hemophilia Treatment Centers funded by the Federal Government in a nationwide network of hemophilia treatment centers. These centers are an important resource for people who have hemophilia, and their families.
6. There are more than 100 Treatment Centers located throughout the United States. Many are located at major university medical and research centers. The hemophilia teams at these centers include:
- Nurse coordinators
- Social Works
- Physical Therapists
7. Remember that young children that may be suffering from this disorder need extra protection from things in the home and elsewhere that could cause injuries or bleeding.
- Protect* toddlers with protective wearable gear such as kneepads and protective helments.
- Use safety belts and straps in high chairs, car seats, and strollers to protect* your child from falls.
- Remove* or replace furniture with sharp corners
- Make sure sharp objects, of any kind are hidden and locked away
- Check play equipment and outdoor play areas for possible hazards.
This is not a debilitating disorder/disease, however it is very serious. There is no cure*, remember, but there are treatments available.
8. The main treatment for hemophilia is called replacement therapy. This is a complicated treatment sequence that involves infusing concentrates into the bloodstream which are to provide the right proteins for clotting factors.
Finally, the main thing to remember here is that your friend with hemophilia is not going to bleed to death from a paper cut. IT may take some time to quit bleeding, though it should not bleed long or hard enough for him or her to die.
Take these notes into consideration if you’re dealing with someone with this rare disorder. It should be important for you to recognize that your friend or loved one suffering from this type of disorder is not any different than you or I. There are approximately 400 children born each year with hemophilia, totalling almost 400,000 people worldwide living with the disorder. Before 1938, the average lifespan for someone living with this disease was only 11 years old. Be wary of your loved ones and help them, take care of them and be prepared for severe circumstances as someone living with hemophilia is at far greater risk when exposed to injury.
Hemophilia is also known as the Royal Disease, for its affiliation with the royal family. Queen Victoria passed the disorder on to her son Prince Leopold and he was affected by the disorder when he fell down some stairs. The incident caused only minor bumps and bruises but because his blood was prevented from clotting, he was dead within 24 hours.