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Women And Hemo Blog

Women & Hemophilia

2.5 Minute Read

“We can’t find anything wrong with you…”

“You can’t have hemophilia, only males have hemophilia…”

 “Heavy periods are just a part of life…”

We see your tears and try to understand how difficult it is for you to suffer in silence. You are misunderstood and told time and time again that nothing is wrong with you. We hear you when you speak of the frustration and heartache of being told that your symptoms don’t mean anything. You deserve to be heard. Your story and your experiences are real. You matter. We don’t want you to suffer silently any longer. At Paragon Healthcare, Inc., our heart is to give a voice to the women who have lived with hemophilia without a proper diagnosis or treatment. Medical knowledge has advanced, and providers better understand the nature of hemophilia. It is now known that hemophilia is not a disease that only impacts men, but one that women may also have.

“Inherited bleeding disorders are under-recognized as causes of bleeding in girls and women. However, recent data have documented that 50% of girls and women who are carriers for hemophilia A or B have factor VIII or IX levels below 50%, putting them in the category of mild hemophilia and causing them to have an increased risk of bleeding, especially during menstruation and at the time of an accident, surgery, or delivery. Moreover, up to 1% of all girls and women may have laboratory evidence of inherited von Willebrand disease (VWD). and may also have heavy bleeding during menstruation, surgery, or labor and delivery.” (1)

Women in the bleeding disorder community are often underrepresented and we want to change that. Our Hemophilia Division will soon be launching a new initiative called the “Quality of Life Program”. One piece of this program will focus on the women with bleeding disorders. There are many challenges that women with bleeding disorders face and they vastly differ from men – but that doesn’t make it any less real.

Women with symptoms of bleeding disorders may experience one or all of the following:

  • Heavy menstrual periods
    • Bleeding for more than 7 days
    • Flooding or gushing of blood
    • Limited ability to perform daily activities
    • Passing clots that are bigger than a quarter
    • Needing to change tampon and/or pad every 2 hours or less
    • Being “low in iron” or treated for anemia
  • Have a family history of bleeding disorders
  • Heavy bleeding from dental surgery, other surgery, or childbirth
  • Frequent prolonged nose bleeds (longer than 10 minutes)
  • Prolonged bleeding from cuts (longer than 5 minutes)
  • Easy bruising (weekly, raised and larger than a quarter)

Hemophilia is generally misunderstood by the public, and even by insurance companies. The lack of understanding this disorder can cause difficulty with getting the appropriate medical coverage as a male with hemophilia…and it’s even more of a challenge for women. This is where Paragon enters into the equation – we are here to be more than just a healthcare company, but an advocate for those who are suffering.

We want women to receive the care they need and the care they deserve. You have a say in where you receive your treatment, so talk to your doctor about Paragon. We are focused on providing superior levels of service, clinical expertise, and customized care plans to fit each patient’s lifestyle and individual needs.

  • A pharmacist and nurse remain on call 24/7, 365 days a year
  • We handle the referral process, making a smooth transition from your current provider
  • We manage insurance verification, reimbursement, and assist with prior authorizations
  • We communicate regularly with your doctor for your safety and peace of mind
  • Our staff members will connect you with a caring network of family support groups
  • We provide patient education and training as needed
  • Whatever you need, wherever you are, we ship to you overnight, complete with specialty packaging to ensure product is suitable for immediate use

Learn more about the Hemophilia Division at Paragon Healthcare, Inc. on our website at www.paragonhealthcare.com/hemo

 

Additional resources:

https://www.hemophilia.org/Community-Resources/Women-with-Bleeding-Disorders/Women-also-Bleed

https://victoryforwomen.org/

https://www.hemophilia.org/Community-Resources

https://www.hemophilia.org/Researchers-Healthcare-Providers/Medical-and-Scientific-Advisory-Council-MASAC/MASAC-Recommendations/MASAC-Recommendations-Regarding-Girls-and-Women-with-Inherited-Bleeding-Disorders

 

Sources:

  1. James AH,  Kouides PA, Abdul-Nadir R, et al Evaluation and Management of Acute Menorrhagia in Women with and without underlying bleeding disorders: consensus from an international expert panel, Eur J Obstet Gynecol Reprod Biol. 2011 Oct; 158(2): 124-34

 

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