My Thoughts on Freedom and Hemophilia

My Thoughts on Freedom and Hemophilia

This month, we celebrated the two holidays of Easter and Passover. Many of my Christian friends describe Easter as a celebration of freedom over sin and death due to the resurrection of Jesus Christ. My Jewish friends gather to recount the story of Passover, a celebration of freedom from slavery and an escape from the pharaoh’s rule.

Honoring both of these holidays inspired me to think of the link between freedom and hemophilia, and what freedom means to individuals with hemophilia.

Freedom for men with hemophilia

If I were to ask my 12-year-old nephew what freedom with hemophilia means, he would most likely say “no more needles.” My nephew hates infusing, which to him is the worst part of his hemophilia. If he could find a way around the infusions, he would experience great freedom and relief.

Through new treatment options, such as longer-acting factor products, gene therapy, and subcutaneous medication, many men with hemophilia are finding newfound freedom. They need to infuse less, and some are not infusing at all. Recently, I heard from a young man who was part of a gene therapy trial a few years ago. His factor is still at 40 percent and the last time he infused was the day he had gene therapy. What freedom he must feel!

Freedom for women with hemophilia

When I speak with my women friends who have hemophilia, I see that they are looking for a different type of freedom. As individuals who have struggled for years without proper diagnosis or treatment of their bleeding disorders, their desires are different. Women find it freeing to finally be acknowledged as people with hemophilia and to have access to proper care.

Many women are excited to finally have the opportunity to infuse (as shown by frequent posts of infusion photos on social media). The act of infusion, something that many men want liberation from, is something that women with hemophilia are yearning for, as it will allow them to live healthier lives and free them from the burden of living with an untreated bleeding disorder.

What I believe freedom should look like for women with hemophilia

The following are developments that should happen sooner rather than later:

  • Women should have full access to care and be acknowledged as individuals with hemophilia.
  • Medical professionals should understand that women have hemophilia, too.
  • Women should be given the same diagnosis as men with identical factor levels.
  • Women should be provided with the same treatment options as men with similar factor levels.
  • Pain and bleeding episodes should not be minimized or dismissed.
  • Women should be told, “When in doubt, infuse,” just like their male counterparts.
  • Women should be able to walk into any Hemophilia Treatment Center and know that they will receive top-quality care from individuals who understand the bleeding challenges women with hemophilia face.

Unfortunately, freedom is not currently widespread for women with hemophilia. They continue to fight years of genetic misunderstandings and ubiquitous beliefs that women rarely have hemophilia. They are breaking free from years of being dismissed. Progress is being made, just not quickly. For the sake of the undiagnosed women who are struggling with bleeding issues, we must disseminate information to all medical providers regarding women and bleeding disorders. Correct diagnosis and treatment not only will bring women freedom, they also will save lives.

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Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.

6 comments

  1. Judy says:

    I love this article Shellye. Isn’t it interesting that being able to infuse factor comes as such a relief to women who for years have been told “you’re just a carrier”.

  2. Lucy Vallejo-Alviso says:

    With articles like this the medical professionals should be able to more freely acknowledge that what we are saying is real. The text books are not up to date. Just listen to what we are saying and give us the treatment we need.

  3. Ashley Gregory says:

    Thank you Shellye for laying it out simply. Treaters, please read and adjust. We are in need and require your help!

  4. Rick says:

    I am an older severe B, who’s daughter is a hemophiliac…until the day that women are recognized and receive the same treatment as men, I wish to be known as a symptomatic carrier!!!

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