Blog Archive

Monday, September 26, 2016

Hemophilia Myths and Facts



Myths are stories or beliefs created to explain phenomena when scientific knowledge is lacking. Sometimes they persist even when scientific explanations are available, because people can get emotionally impacted by myths. When it comes to blood, people have strong emotional beliefs and feelings, and this may prolong myths. So read this nifty list of myths which includes the facts that dispel the myth. You can download a pdf of this with graphics here.  Enjoy!




Hemophilia is a medical condition that impairs the body’s ability to control bleeding. There are about 20,000 people with hemophilia in the United States and with the condition being so rare, many people may not know much about it. Below we dispel 10 common myths to help you better understand hemophilia.

MYTH
FACT
If a person with hemophilia gets a minor cut, they’ll bleed to death.
People with hemophilia don’t bleed faster, but they do bleed longer because they’re missing a protein in their blood that assists in forming stable clots. Minor cuts are not a cause for concern and will usually heal on their own.1
Only males have hemophilia.
It’s true that hemophilia does primarily affect males because it’s an X chromosome-linked medical condition.1,2 However, females who are carriers can also experience bleeding symptoms. Though extremely rare, a daughter who is born to a father with hemophilia and a mother who is a carrier can inherit the severe form of the condition.3
People with hemophilia always have a family history of the condition.
Nearly one-third of hemophilia cases are not genetically based and have no family history of the condition.1
All people who have hemophilia are diagnosed at birth.
Due to a lack of bleeding at birth or because the family doesn’t have a history of hemophilia, some people who have hemophilia may not be diagnosed until months after birth, as toddlers, or even later, depending on the severity of their
medical condition.4,5
Children with hemophilia will grow out of it.
Hemophilia is a lifelong condition, a bleeding disorder caused by the absence of an essential blood clotting protein.1 While there is no available cure for hemophilia, research continues to progress and shows promise. Scientists are currently researching how gene therapy can help the body produce its own clotting factor.2
Hemophilia is the same for all patients.
People can have hemophilia A, which is defined by low levels of clotting factor VIII (8), or hemophilia B, defined by low levels of clotting factor IX (9).1,3 The severity of hemophilia is categorized as mild, moderate, or severe.1 Additionally, about 15% to 20% of people with hemophilia will develop an antibody—also called an inhibitor—which is one of the most serious complications of the condition.6
People with hemophilia shouldn’t exercise or play sports.
Exercise is important for people with hemophilia because it strengthens muscles, which helps protect joints, and reduces the risk of being overweight, which places added stress on joints. They should work with their health care professional to create a fitness plan that’s right for them.7
Hemophilia is a “royal disease.”
While it’s true that in the 1800s hemophilia did affect the royal family of Queen Victoria of England, hemophilia affects people regardless of race, ethnicity or economic status.2,4
Hemophilia causes AIDS.
Hemophilia doesn’t cause HIV/AIDS. Unfortunately, from 1978–1985, many people with hemophilia did contract HIV when they received treatments made from tainted blood donations. The blood supply is now much safer due to improved donor screening and advanced purification methods, and also, many newer treatments aren’t made from donated human blood. There hasn’t been a documented case of HIV from the use of hemophilia treatments since 1987.2
People with hemophilia can’t live normal lives.
With proper treatment, most people with
hemophilia lead long, full, and productive lives.4

References
1.    National Hemophilia Foundation. Hemophilia A. https://www.hemophilia.org/Bleeding-Disorders/Types-of-Bleeding-Disorders/Hemophilia-A. Accessed November 3, 2015.
2.    National Hemophilia Foundation. History of Bleeding Disorders. https://www.hemophilia.org/Bleeding-Disorders/History-of-Bleeding-Disorders. Accessed November 3, 2015.
3.    Midwest Hemophilia Association. Myths and Facts About Hemophilia. http://midwesthemophilia.org/what-is-hemophilia-bleeding-disorders/hemophilia-blood-disordersfacts-myths. Accessed November 3, 2015.
4.    Indiana Hemophilia & Thrombosis Center, Inc. Hemophilia Awareness Month – Fast Facts for Patients. http://www.ihtc.org/wp-content/uploads/2012/02/Hemophilia%20Awareness%20-%20Fast%20Facts%20for%20Patients.pdf. Accessed November 3, 2015.
5.    Centers for Disease Control and Prevention. Hemophilia Diagnosis. http://www.cdc.gov/ncbddd/hemophilia/diagnosis.html. Accessed June 7, 2016.
6.    Centers for Disease Control and Prevention. Hemophilia Inhibitors. http://www.cdc.gov/ncbddd/hemophilia/inhibitors.html. Accessed June 13, 2016.
7.    National Hemophilia Foundation. Playing It Safe: Bleeding Disorders, Sports, and Exercise. https://www.hemophilia.org/sites/default/files/document/files/PlayingItSafe.pdf. Accessed November 3, 2015.

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Sunday, September 18, 2016

Pfizer’s Give Forward Program offers you a way to give back to your community

The hemophilia community has a big heart and is always there to help others. I have my own international nonprofit to help those with hemophilia in developing countries. And there are programs right here in the United States that can help hemophilia related charities. 

Below is one such program. Please read and click through to learn more!


The free BeneFix Give Forward Program provides you with the opportunity to earn points and then turn your points into charitable donations for organizations that mean the most to you. How are these points earned? By engaging with Pfizer Hemophilia’s content, programs, and services on the Give Forward website.
 





The BeneFix Give Forward Program is mobile friendly, so you can take it on the go without downloading an app.




Sign up today at BeneFixGiveForward.com to see how you can start earning points!

What Is BeneFIX?

BeneFIX, Coagulation Factor IX (Recombinant), is an injectable medicine that is used to help control and prevent bleeding in people with hemophilia B. Hemophilia B is also called congenital factor IX deficiency or Christmas disease.

BeneFIX is NOT used to treat hemophilia A.

Important Safety Information

·       BeneFIX is contraindicated in patients who have manifested life-threatening, immediate hypersensitivity reactions, including anaphylaxis, to the product or its components, including hamster protein.
·       Call your health care provider right away if your bleeding is not controlled after using BeneFIX.
·       Allergic reactions may occur with BeneFIX. Call your health care provider or get emergency treatment right away if you have any of the following symptoms: wheezing, difficulty breathing, chest tightness, your lips and gums turning blue, fast heartbeat, facial swelling, faintness, rash or hives.
·       Your body can make antibodies, called “inhibitors,” which may stop BeneFIX from working properly.
·       If you have risk factors for developing blood clots, such as a venous catheter through which BeneFIX is given by continuous infusion, BeneFIX may increase the risk of abnormal blood clots. The safety and efficacy of BeneFIX administration by continuous infusion have not been established.
·       Some common side effects of BeneFIX are nausea, injection site reaction, injection site pain, headache, dizziness and rash.

Click here for full Prescribing Information.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.





PP-BEN-USA-0188-01

Sunday, September 11, 2016

As I Get Older

This is a lovely essay submitted by one of our PEN readers, a reflection on what an older gentleman in our community has learned... and wishes to share with younger people.



By Richard Hiteshew

I am 75 years old and have severe hemophilia B. I infuse twice weekly, 5,000 IU. When I was growing up I thought that I would not be able to walk in my later years due to the hundreds of leg injuries I sustained as a child. I still walk but have had other difficulties. Frankly, I was not prepared for advanced age. In the interest of helping others avoid some of the pit falls, I would like to give some advice.

First and foremost, you must own yourself. You have a disorder. I remember my mother telling me when I was six or seven years old, "Richard, you were dealt a bad hand, make the most of it." Hemophilia has been referred to as the "royal disease." It was in the German, Spanish, English and Russian royal families in the 1800-1900s. I believe it is called the royal disease because it is a royal pain! Hemophilia is a chronic disorder that can, in 15 minutes of sustaining an injury, become critical. You must personally own it and learn how to work with it.

Proverbs 16:18 says pride goes before a fall. Get handicapped tags for your car. Buy a four-prong cane. Get rid of your pride. You may be in a wheelchair, crutches, braces, or have a terrible limp. So what? Hold your head high and remember that there are people who have it a lot worse than you. Purchase a fold up chair that has side arms. The arms will help you get out of the chair. Keep the foldable chair in your car. Purchase a lift chair to help you get up for home use. They are very expensive, but you can buy them for a deep discount on Craigslist.

I have all of my original joints except for my right shoulder. Several years ago I had to undergo total reverse shoulder replacement. The reason for the replacement was a loss of cartilage in my shoulders. That loss was caused primarily by lifting myself from a sitting position using my arms instead of my legs. I also had to lift myself from my many sports cars. The sports cars are fun but sit low to the ground, and we unknowingly injure ourselves getting in and out. So lose the sports cars and get a minivan. It is my experience that the best minivans for impaired people are the midsized like the Ford Escape, Cadillac SRX, and BMW X3. A good test is that you want the seat to be butt level. You also want the vehicle to have wide doors to allow easy entry and exit.

Prevent falls. When walking, even for a short distance, never try to carry something in both hands. You need a free hand for balance or to steady yourself. Put handrails on all steps, even if it is only two or three. Additionally, put grab bars anywhere you may need them. I have nine grab bars in my bathroom. I also have them at every step down in my home, both inside and outdoors. Make your home handicapped accessible.

When walking, never, ever step out of someone's way. Side stepping is dangerous. Stand still and let the other person walk around you. Never walk backwards for any reason. You cannot see what is behind you. Learn to fall down. It's called tuck and roll. If you feel yourself falling, tuck your arms close to your body with one hand over the other and turn your body so you will land on your shoulder. Your shoulder will take a hit better than your hip. Don't try to catch yourself. That is how elderly people break their arms or worse yet, their wrists. If you are walking on grassy surfaces, either use your cane or hold onto someone's arm. Divots in grass can drop you in a flash.


Finally, be your own advocate. Don't listen to other people who say “It’s going to be ok.” If it’s not ok, there is only one person in the world that will suffer the consequences: you. If you are not comfortable with anything, assert yourself and say no. If you are mistaken you can always have a do over. Learn as much as you can about your disorder so that you know more than anyone… maybe even your doctors!

Sunday, September 04, 2016

How to Handle a Bleeding Disorder During the School Year



The start of a new school year is a stressful and exciting time for both kids and parents. If you’re the parent or caregiver of a child with a bleeding disorder, you have a lot more to consider than just which school supplies to buy. There are precautions you can take before and during the year to ensure things go as smoothly and safely as possible. 

Talking to Your Child 

The best way to prepare for the new school year is to get together with your child, their doctor, and the school staff to agree on a plan. Start by having a one-on-one conversation with your child. Make sure they understand their condition and encourage them to speak up if they need help or are experiencing a bleed while in school. They should know how important it is to take care of their bleeds right away. 

Talking to a Physician 

Next, meet with your child’s hemophilia treatment center (HTC) doctor or nurse to come up with a treatment plan. Talk about your child’s participation in sports and other physical activities. You should sit down with the HTC doctor or nurse before any meetings you have with the school regarding bleeding disorders, because it is good to have an overall understanding of things yourself. 



Talking to the School Staff 


It is important to plan a meeting with the school staff before the school year is in full swing. If you haven’t done this yet, try to organize a meeting as soon as you can; don’t wait for back-to-school night when teachers will be busy meeting with many parents in one evening. 



Contact the school nurse, counselor, or principal to organize the meeting. You should talk about safety precautions, the storage and possible use of treatment in school, and the importance of not singling out or embarrassing your child. People who should be at the meeting include: 

  • You and your child 
  • Primary teacher(s) 
  • Gym teacher 
  • School nurse 
  • An administrator (eg, principal, vice principal) 
  • A previous teacher who has experience with your child’s condition (if available) 


What to Do During the Year 

During the school year, your child needs to be comfortable speaking up if or when bleeds occur, and teachers should be able to recognize bleed symptoms as well. Provide them with a checklist of basic symptoms, as well as an emergency contact list of whom to call if a bleed happens. The same goes for gym class and after school activities—if your child can participate in these activities, the staff should be on the lookout for bleeds or other issues. 

If the bleeding disorder causes absences or missed schoolwork, you, your child, and their teacher(s) should work together to figure out the best way to get caught up. Your child should know that it is okay if their condition prevents them from completing some work on time, but that bleeds are not an excuse to put off responsibilities. 

Working as a Team 

Perhaps the most important thing is to keep in mind that everyone involved is part of a team. You all have the same end goal: to help your child have a productive and enjoyable school year. The school staff may not have much experience with bleeding disorders, which is why it’s important that you all work together throughout the year to ensure your goals are reached. 

For printouts on bleed symptoms, emergency contact information, and other useful resources for the school and your child, visit the NovoSecure™ downloads page

This is a sponsored message from Novo Nordisk. 

 
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