Overview

If you are living with hemophilia or von Willebrand disease, you are not alone. This section provides an interactive experience for you to see how others like you manage their treatment decisions. You will read patient stories and can even share your own. Do you ever wonder if what you hear about bleeding disorders is true? Check out the "Myth or Fact" page to find out.


Are you into sports or other high impact activities, but worried about the risk? The "Activity Risk Scale" will help guide you in the right direction.

Meet Sam

Sam is a 25-year-old who was diagnosed with hemophilia A at the age of 3 as a result of a fall. Due to his history of unexpected bleeding, he is concerned with an upcoming procedure to have his third molars extracted. Sam developed inhibitors after receiving high doses of FVIII during a knee surgery 5 years ago. He has also reported previous accounts of unexpected severe bleeding in both knees with minor traumatic events.


If you have an experience similar to Sam's and would like to share your story, click the link below.*

Meet Martin

Martin is a 17-year-old who was diagnosed with hemophilia A at birth. His genetic disposition includes an inversion involving intron 22, which is the most common type of mutation present in severe hemophilia A patients. He has recently increased his physical activity and is now playing golf. His primary concern is pain in both knees. Martin notes another main challenge he faces is the lack of effectiveness of prophylactic treatment to control his bleeds. If you have an experience similar to Martin's and would like to share your story, click the link below.*

Meet Annie

Annie is a 16-year-old who presented with a recurrence of tonsillitis, heavy periods, and easy bruising. Annie needs a tonsillectomy, which is one of the primary challenges she faces, along with an extremely prolonged aPTT (activated partial thromboplastin time). Upon research into her family history, it was clear that Annie's mother had also endured heavy periods and easy bruising. Her mother specifically recalls bleeding issues after the removal of her third molars, which supports Annie's concern regarding having a tonsillectomy, and after further evaluation, Annie was diagnosed with type 2N VWD. If you have an experience similar to Annie's and would like to share your story, click the link below.*

Share Your Story

Sharing your personal ALPHANATE story can inspire others who are in a similar situation and seeking ways to better manage their condition.

Please see Important Safety Information and ALPHANATE® (antihemophilic factor/von Willebrand factor complex [human]) full Prescribing Information for complete prescribing details.

Not sure what to say? Consider one of these conversation starters:

  • What advice would you give to someone who just received a diagnosis?
  • What has been your biggest challenge dealing with hemophilia A and VWD?
  • What have you done to overcome that challenge?
  • What resources have you found helpful?
  • What has been your experience with ALPHANATE?

Myth or Fact?

If a person with hemophilia gets a cut, they will bleed to death.

Highly unlikely. People with hemophilia do not bleed any faster, they simply bleed longer. Small cuts are generally not a cause for concern and a bandage will suffice in most cases. For joint and muscle bleeds, apply usual first aid treatment, including rest, ice, compression, and elevation (R.I.C.E).4

Hemophilia affects only males.

While many people assume hemophilia affects only males, females can be carriers and also suffer from some bleeding symptoms. It is very rare that females inherit the severe form of hemophilia.4

Patients with hemophilia always have a family history of the disease.

Nearly 1/3 of hemophilia cases are not genetically based and have no family history of the disease.4

Activity Risk Scale

No matter how well conditioned you are and no matter what level of skill you have, different activities carry different risks.

Individuals with hemophilia and von Willebrand disease can be at an increased risk when playing sports or exercising. Understanding these risks can help you make good choices about what type of activity you choose to participate in.5

Select a risk level to see how certain activities rank on a scale from 1 (safe) to 3(dangerous).

It is important to note that Level 1, Level 1.5, and Level 2 indicate that the health benefits of these particular activities may outweigh the associated risks. All sports that are rated as Level 2.5 and Level 3 are dangerous and are not recommended for people with bleeding disorders.5

 
 
 
 
 
 

Safe

Very Low Risk5

  • Archery
  • Aquatics
  • Stationary bike
  • Fishing
  • Frisbee
  • Golf
  • Hiking
  • Snorkeling
  • Swimming
  • Walking

Safe to Moderate

Low Risk5

  • Bicycling
  • Treadmill
  • Circuit training
  • Body sculpting
  • Spinning
  • Frisbee golf
  • Pilates
  • Skiing
  • Wt. Lifting/ resist. training
  • Rowing

Moderate

Medium Risk5

  • Aerobics
  • Bowling
  • Stepper
  • Dance
  • Cardio kick-boxing
  • Rock climbing (indoor)
  • Roller-skating
  • Running/jogging
  • Tennis
  • Yoga

Moderately Dangerous

High Risk5

  • Baseball
  • Basketball
  • Cheerleading
  • Horseback riding
  • Kayaking
  • Mountain biking
  • River rafting
  • Soccer
  • Softball
  • Surfing

Dangerous

Very High Risk5

  • Boxing
  • Football
  • Hockey-all
  • Motorcycling/motor cross racing
  • Lacrosse
  • Rugby
  • Power Lifting
  • Rock climbing-natural
  • Scooter-motorized
  • Wrestling
 
 
 
 
 
 
 
 
 
 

Safe

Very Low Risk5

  • Archery
  • Aquatics
  • Stationary bike
  • Fishing
  • Frisbee
  • Golf
  • Hiking
  • Snorkeling
  • Swimming
  • Walking

Safe to Moderate

Low Risk5

  • Bicycling
  • Treadmill
  • Circuit training
  • Body sculpting
  • Spinning
  • Frisbee golf
  • Pilates
  • Skiing
  • Wt. Lifting/ resist. training
  • Rowing

Moderate

Medium Risk5

  • Aerobics
  • Bowling
  • Stepper
  • Dance
  • Cardio kick-boxing
  • Rock climbing (indoor)
  • Roller-skating
  • Running/jogging
  • Tennis
  • Yoga

Moderately Dangerous

High Risk5

  • Baseball
  • Basketball
  • Cheerleading
  • Horseback riding
  • Kayaking
  • Mountain biking
  • River rafting
  • Soccer
  • Softball
  • Surfing

Dangerous

Very High Risk5

  • Boxing
  • Football
  • Hockey-all
  • Motorcycling/motor cross racing
  • Lacrosse
  • Rugby
  • Power Lifting
  • Rock climbing-natural
  • Scooter-motorized
  • Wrestling

Indications

ALPHANATE® (antihemophilic factor/von Willebrand factor complex [human]) is indicated for:

  • Control and prevention of bleeding episodes and perioperative management in adult and pediatric patients with factor VIII (FVIII) deficiency due to hemophilia A
  • Surgical and/or invasive procedures in adult and pediatric patients with von Willebrand disease (VWD) in whom desmopressin (DDAVP) is either ineffective or contraindicated. It is not indicated for patients with severe VWD (type 3) undergoing major surgery

ALPHANATE is contraindicated in patients who have manifested life-threatening immediate hypersensitivity reactions, including anaphylaxis, to the product or its components.

Anaphylaxis and severe hypersensitivity reactions are possible with ALPHANATE. Discontinue use of ALPHANATE if hypersensitivity symptoms occur, and initiate appropriate treatment.

Development of procoagulant activity-neutralizing antibodies (inhibitors) has been detected in patients receiving FVIII-containing products. Carefully monitor patients treated with AHF products for the development of FVIII inhibitors by appropriate clinical observations and laboratory tests.  

Thromboembolic events have been reported with AHF/VWF complex (human) in VWD patients, especially in the setting of known risk factors.

Intravascular hemolysis may occur with infusion of large doses of AHF/VWF complex (human).

Rapid administration of a FVIII concentrate may result in vasomotor reactions.

Because ALPHANATE is made from human plasma, it may carry a risk of transmitting infectious agents, eg, viruses, the variant Creutzfeldt-Jakob disease (vCJD) agent, and, theoretically, the Creutzfeldt-Jakob disease (CJD) agent, despite steps designed to reduce this risk.

Monitor for development of FVIII and VWF inhibitors. Perform appropriate assays to determine if FVIII and/or VWF inhibitor(s) are present if bleeding is not controlled with expected dose of ALPHANATE.

The most frequent adverse drug reactions reported with ALPHANATE in >1% of infusions were pruritus, headache, back pain, paresthesia, respiratory distress, facial edema, pain, rash, and chills.

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.

Please see full Prescribing Information for ALPHANATE.

 


Reference

  1. World Federation of Hemophilia website. http://www.wfh.org/. Accessed September 29, 2014.
  2. Hemophilia Federation of America website. http://www.hemophiliafed.org/. Accessed September 29, 2014.
  3. Philipp, C. The Aging Patient with Hemophilia: Complications, Comorbidities, and Management Issues. Hematology. 2010; 1:191-196.
  4. Midwest Hemophilia Association website. Myths and Facts About Hemophilia. http://midwesthemophilia.org/what-is-hemophilia-bleeding-disorders/hemophilia-blood-disordersfacts-myths/. Accessed September 29, 2014.
  5. Anderson, A, Forsyth, A Playing it Safe, NHF 2005 and the American Academy of Pediatrics.