Thursday, February 27, 2014

Bibliography

World Foundation of Hemophilia. N.p., n.d. Web. 26 Feb. 2014. 
     <http://www.wfh.org/>.

Science Daily. N.p., n.d. Web. 26 Feb. 2014. <http://www.sciencedaily.com/ 
     releases/2013/12/131210152526.htm>. 

Rare Disease Recycling. N.p., n.d. Web. 26 Feb. 2014. 
     <http://rarediseasecycling.org/wp-content/uploads/2013/12/ 
     CauseHemophiliaInfusion.jpg>. 

National Hemophilia Foundation. N.p., n.d. Web. 26 Feb. 2014. 
     <http://www.hemophilia.org/>

National Heart, Lung, and Blood Institute. N.p., n.d. Web. 26 Feb. 2014. 
     <http://www.nhlbi.nih.gov/>. 

Kid's Health. N.p., n.d. Web. 26 Feb. 2014. <http://www.kidshealth.org/>. 

Hemophilia Information. N.p., n.d. Web. 26 Feb. 2014. 
     <http://www.hemophilia-information.com/images/geneFatherMother.gif>

Hemophilia Federation of America. N.p., n.d. Web. 26 Feb. 2014. 
     <http://www.hemophiliafed.org/bleeding-disorders/hemophilia/inhertance/>

"Gene Chart." Hemophilia Information. N.p., n.d. Web. 27 Feb. 2014. 
     <http://www.hemophilia-information.com/images/geneFatherMother.gif>

Centers for Disease Control and Prevention. N.p., n.d. Web. 26 Feb. 2014. 
     <http://www.cdc.gov/>.

Buzzle. N.p., n.d. Web. 26 Feb. 2014. <http://buzzzle.com/articles/ 
     history-of-hemophilia-disease.html>.

"Baby with Hemophilia." Rayur. Rayur, n.d. Web. 27 Feb. 2014. 
     <http://www.rayur.com/wp-content/uploads/2012/07/hemophilia.jpg>.

Tuesday, February 25, 2014

We recently interviewed Doctor Deborah Gordish about hemophilia and are posting her exact responses to our interview questions, along with pictures, below.


1. Have you ever had a patient with hemophilia, and if not, do you know of a doctor that has?
 
I have about 15 patients with hemophilia. Most have hemophilia A. I typically manage the milder cases, but have all established with a hematologist in Columbus.


2. How are surgeries done when a patient has severe hemophilia?

Mild cuts and bruises are treated with a topical nasal spray but before surgery a transfusion of the abnormal blood clothing proteins is given.


This diagram shows the possible outcomes of a mother who is a carrier of hemophilia.



3. What are some programs here in Ohio that can help families cope with the disease?

Education and support are found online and at the National Hemophilia Society, which has a chapter in Columbus. The James Cancer Hospital also has patient education.


4. How are anemia and hemophilia different?

Anemia is when one's red blood cells are low; hemophilia is where a protein in the blood is abnormal and does not allow blood to clot correctly, leading to abnormal bleeding.



A baby affected with hemophilia.


5. Should hemophiliacs eat a certain diet?

There are no restrictions on diet but restrictions on certain dietary supplements and over the counter medications (aspirin and ibuprofen) that decrease clotting mechanisms in the body.


6. Is a special doctor called in to perform the blood tests?

I would typically order the blood tests to diagnose hemophilia and then consult with a hematologist for treatment and management.


7. Are there any charities you know of to help hemophiliacs?

Columbus has a chapter of The National Hemophilia Society. It does not provide charity or care to the patients but support in education and help in finding care. Most hospital systems have charity care programs that patients can apply for if they cannot afford care and then see the doctors for necessary care.



A young boy taking medicine for hemophilia.


Below are links to educational, personal, and motivational help services:

http://www.hemophiliafed.org/news-stories/moms-blog/
http://www.dailystrength.org/c/Hemophilia/support-group
http://www.thereforyou.com/hemophilia-support/hemophilia-advocacy/organizations.html


Sunday, February 23, 2014

This video is about a teenager named Skylar who is diagnosed with hemophilia.  He shows that even with hemophilia, he has not let it take over his life - he is an active cross country runner, and is able to live a relatively normal life.

http://www.youtube.com/watch?v=lZVwGf-8qRQ

Tuesday, February 18, 2014

Did you know...?

  • Women can have eggs removed and tested for hemophilia.  Only the eggs without the disease are fertilized and injected into the woman's body. 
  • Aspirin, ibuprofen, and appoxen will make a hemophiliac's stomach bleed.
  • All people with hemophilia should be vaccinated against hepatitis A and B
  • Bleeding of the head and brain are the second most common places for bleeding in babies, making it particularly difficult to diagnose.
  • The average price for treatment is between $60,000 to $200,000 annually, not including complications.
  • Life expectancy of a hemophiliac is dependent on the severity of the disease and the amount of treatment available or received: without treatment, death typically falls before adulthood, but with treatment, there is only a ten year shorter life expectancy for the average hemophiliac.
  • Queen Victoria had hemophilia, spreading it to her heirs and across European royalty, coining the term "royal disease".
  • Joint swelling and bleeding, bringing on lots of pain, is an unfortunate symptom. However, with regular exercise, aside from contact sports, the bleeding risk lowers.

Thursday, February 13, 2014

Scientists are discovering that gene therapy can be used in the future to help lesser the symptoms of hemophilia.  If patients develop antibodies to certain hemophilia medications, gene therapy can be used as an alternative.  Below is a link to an interesting article showing studies on the effects of gene therapy.


http://www.sciencedaily.com/releases/2013/12/131210152529.htm?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+sciencedaily%2Fplants_animals%2Fdogs+%28Dogs+News+--+ScienceDaily%29
Hemophilia is a sex-linked genetic disorder that causes low levels of clotting agents in blood.  There are three different types of hemophilia: Hemophilia A, B, and C.  Hemophilia A is the most common and effects clotting factor 8, while hemophilia B effects clotting factor 9.  This is more common in males because it is a sex-linked trait, meaning that mothers are the carriers of the trait.  Hemophilia C is very rare, and can effect females as well.  The first signs of hemophilia in children include bleeding of the mouth as teeth develop, easy bruising, especially when learning to walk and prolonged nosebleeds.  Blood tests are preformed within the first 1-2 years of life if a child is suspected to have hemophilia, but most adults with mild hemophilia discover it after severe bleeding trauma.