By: Grace Kearney

Background Information

Hemophilia is a very serious genetic disorder. What is hemophilia? Google says that it is "a medical condition in which the ability to clot blood is severely reduced, causing the sufferer to bleed severely from even a slight injury. In an easier way to understand, Hemophilia is a genetic disorder where there are abnormalities of one or two of the chromosomes, led to uncontrollable bleeding. Hemophilia is very rare, though. 1 out of 5000 males suffer from this awful disease. Currently, there are about 20,000 males living with Hemophilia right now.

Hemophilia Presentation

How do you "get" Hemophilia?

While sexually reproducing, the two parents have X and Y chromosomes they pass on. A father carries the X and Y chromosomes, and the mother carries two X chromosomes. While reproducing, there might be a defective X gene from the mother. In that defective gene, there is a missing blood clotting factor. That factor is missing in the VIII chromosome or the IX chromosome. The mother will then pass that defective gene to her children, which diagnoses them with Hemophilia.

The picture below shows the process of inheriting Hemophilia.

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Lifespans with Hemophilia

Normally, people would generically think that you will bleed to death of Hemophilia. On a very, very rare time, that could happen. If the bleeding is totally out-of-control, you would be rushed to the hospital. On normal cases, a treated Hemophilia patient can live a normal lifespan.

The History of Hemophilia

Hemophilia was first discovered by Dr. Judith Pool. She discovered it in the 1960's. We do not know exactly what date, but hemophilia.org said that it was founded in the early 1960's. The website also said that Hemophilia was recognized in ancient times, but it was not named hemophilia until later. The actual word "Hemophilia" was first used by Hopff, in 1828, at the University of Zurich.

Below, is a picture of Dr. Judith Pool.

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The Royal Disease

Hemophilia was also called "The Royal Disease". It was called that, because Victoria (Queen of England from 1837 to 1901), was a carrier of hemophilia. Queen Victoria had many children, and her eighth son, Leopold, inherited the Hemophilia. If he ever had a small injury, that body part would bleed uncontrollably.

The picture below is of Leopold.

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Symptoms of Hemophilia

If you suffer with Hemophilia, you may have external or internal bleeding. External bleeding might come out of your mouth, lips, nose, or tongue. Internal bleeding may be in your knees, ankles, elbows, hips, back, fingers, hands, and hip joints. The internal bleeding will turn very dark and swell. If you ever see any of these symptoms, call or visit a Hemophilia Treatment Center.

Below, to the right, is a picture of internal bleeding. Below, to the left, is external bleeding. Below, to the middle, is a large swelling of a knee.

Do you have Hemophilia?

There are many diagnostic tests that will find out if you have Hemophilia. If you believe you have Hemophilia, go to a Hemophilia Treatment Center. There, specially trained doctors will take you through a series of test called coagulation study. During the coagulation study, it scans and measures your body's ability to cot, and also the amount of time it takes to clot. If a coagulation is found, there will be follow up tests to find the specific factor.

Below is a picture of results from a real coagulation study.

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Living with Hemophilia is hard, so is there a cure? The answer is no. So far, doctors and Hemophilia specialists have not found any cures to the disease so far. But, there are many treatments that can be given prior to a surgery/extraction, etc. There are some prescriptions, like Amicar, Desmopression, Ddavp, or DDAVP. You can also self-treat your Hemophilia. Some self treatments include Lysteda and Cyklokapron. You could also take an IV fluid to hep stop the bleeding. If you go to a Hemophilia Treatment Center, they may also give you a VIII concentrate.

Hemophilia Organizations/Support Groups

If you are in need of help with your Hemophilia, here are some organizations to call.

-Canadian Hemophilia Society

-National Hemophilia Foundation

-New England Hemophilia Association

-Hope for Hemophilia

-Hemophilia Association of San Diego County

-Health Care Comission.

Hemophilia on Social Media!

Join the National Hemophilia Foundation and Hemophilia Foundation of America on Twitter!



or use the hashtag #HemoChat.