Hemophilia: A brief explanation
Day to Day Challenges
Hemophilia
Hemophilia is a disease that prevents blood from clotting.
Teen's dealing with Hemophilia can experience daily difficulties with their disease but can also lead very good lives and in good health
- Physical: Being active is a very important part of their health
- Exercise strengthens joints and muscles which can help prevent bleeding
- They can still play sports:
- Great options are swimming and cycling because they put less strain on joints
- Team sports can be played but full contact sports are avoided
Mental: Sometimes it can be hard for someone with Hemophilia to accept themselves because they feel they can't do all the things a person without the disease can
- There are camps for people with Hemophilia where they can have a good time but also learn about there condition and the best way to meet their daily demands
Social: People with Hemophilia can still hang out with friends, do exercises and work out, and go on dates
As long as they are careful they can do almost anything any teen can do
It is a genetic disorder and is non-communicable
- It can either be passed from parent to child or developed in the womb
- People with this disease often bleed excessively even with a small cut
- It is more common among males
http://www.nlm.nih.gov/medlineplus/ency/article/000539.htm
http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=178&contentid=6
http://www.nhlbi.nih.gov/health/health-topics/topics/hemophilia/
http://www.mayoclinic.com/print/hemophilia/DS00218/DSECTION=all&METHOD=print
http://www.nhlbi.nih.gov/health/health-topics/topics/hemophilia/treatment.html
http://kidshealth.org/teen/diseases_conditions/blood/hemophilia.html#
http://www.medicalnewstoday.com/info/hemophilia/
http://www.license.umn.edu/Products/Hemophilia-Therapy--High-Function-Blood-Clotting-Factor-IX__20120085.aspx
http://en.wikipedia.org/wiki/Haemophilia
http://www.koate-dvi.com/images/about_chart1.jpg
Four points of interest
1. What information was most interesting or suprising to you?
The most common type of hemophilia also known as classic hemophilia
We were surprised to learn that there was no real cure for this disease. In 12th century AD, an Arabian physician named Albucasis observed that males in a certain village died from uncontrollable bleeding. This shows that studies of occurrences such as uncontrollable bleeding have been happening for a long time. However, even in modern times there is no cure but only temporary treatments.
- About 80%-85% of those with hemophilia have type A
2. How does your topic connect to Life Management Skills?
1. The types of Hemophilia
2. The symptoms of Hemophilia
3. Treatment of Hemophilia
4. Severity of Hemophilia
It is no
Our topic connects to Life Management Skills because it affects all three sides of the health pyramid negatively. On the physical side, people with hemophilia have a lack of physical use because to much strain on their bodies could be life threatening. On the mental side, these people might feel inferior to people without hemophilia because they can't do the same things most people can do. On the social side, some people with hemophilia are limited to spending time in the outside world for risk of severe injuries so they wouldn't have much time to socialize in the outside world.
- Hemophilia A is most associated with males
3.How does your topic affect the health of teens?
- Hemophilia A is caused by a deficiency in factor VIII
Hemophilia affects the health of teens because teenagers with this disease can't always do all the activities someone without it can. Dangerous or very demanding sports are a challenge and can be impossible for a person with this to play. THis means that teens with hemophilia have a lack in physical activities. This also affects the ability for these teens to spend their social life since they are limited from going outside.
- Hemophilia A is largely an inherited trait among families but in about 30% of these cases there is no family history of the disorder and the condition is the result of a gene mutation.
4. Why did you pick this topic?
- Fun fact: Queen Victoia was a carrier of Hemophilia and passed it down to many family members
We chose Hemophilia as our topic because it seemed unique, we didn't know much about it so we had the opportunity to learn a lot, and we heard a little bit about the disease in history class so it got our attention.
- About every 1 in 5,000 to 10,000 boys have Hemophilia A
Most people with Hemophilia tend to have:
The levels of Hemophilia are mild, moderate, and severe
- Nosebleeds
- Bruising, especially a large, lumpy bruise
- Bleeding for no known reason
- Blood in the urine or stool
- Bleeding that does not stop after getting a cut, having a tooth out, getting an injury to the mouth or having surgery
- Bleeding that does not stop after circumcision
- Bleeding into a joint, which can cause tightness, swelling and pain
- People with mild hemophilia have 6% - 49% of the normal clotting factor in their blood. It is only serious in a severe injury or surgery.
- People with moderate hemophilia about, 15% of the hemophilia population, have 1% - 5% of the normal clotting factor in their blood. They sometimes bleed for no apparent reason and have periods of bleeding after injuries
- People with severe hemophilia about 60% of the hemophilia population, have <1% of the normal clotting factor in their blood. They bleed immidiatley from injuries and often bleed periodically from the joints and muscles
Hemophilia B or the "Christmas Disease" is mainly caused by a lack of blood clotting factor IX
- Without this factor the blood cannot clot properly
- This factor is related to an X-linked recessive trait, with the defect on the X chromosome
- Since females have two X chromosomes they are at less of a risk for this disease
- If one gene is defective but the other is normal the one chromosome can still produce enough factor IX
- Males only have one X chromosome
- If factor IX is missing from this chromosome they have Hemophilia B
- So if a woman has one defective IX gene, they are considered a carrier
- A boy born from a woman with this trait has a 50% chance of getting Hemophilia B
- A girl born from a woman with this trait has a 50% chance of becoming a carrier
Treatments for Hemophilia
The most widely used form of treatment for Hemophilia is replacement therapy
- Concentrations of clotting factor 5 (VIII) for type A and clotting factor 9 (IX) for Hemophilia B are slowly dripped or injected into a vein
- These infusions can help replace a factor that is low or missing
- Replacement therapy can be given on a regular basis as a preventative or prophylactic therapy
- Another method is demand therapy that uses the treatment when needed
- Demand therapy can be cheaper and less intensive but you take the risk that you might not be able to stop the damage caused by bleeding in time
Hemophilia C is caused by a shortage of clotting factor 11
- Symptoms are considered the least extreme of the three types
- Hemophilia C isn't one of the main types of the disease and is considered to be a little rare
- Hemophilia C affects both sexes equally because it is not completely a rececive trait
There are other varied forms of hemophilia but A and B are the two main types
- Around 500,000 people have Hemophilia world wide
- More than 20,000 people have Hemophilia in the Uniteds States
- About 400 babies are born in the United States with Hemophilia
- People with Hemophilia, without proper treatment, tend to die before adulthood but thanks to technology and proper treatment, they can live about 10 years less than a person without Hemophilia
- Around 100 people die from Hemophilia each year
- A few other treatments such as Desmopressin and Antifibrinolytic medicines can be used but often only apply to certain situations
- Gene Therapy is also being researched but isn't advanced enough to be a acceptable treatment. However there are clinical trials