From MedPage Today:
"The challenges to treating these women are exacerbated by a lack of specificity when it comes to how you describe a carrier with bleeding issues, said Robert Sidonio, Jr., MD, MSc, of the Aflac Cancer and Blood Disorders Center of Children's Healthcare of Atlanta.
'The term "carrier" almost denotes that there are no clinical symptoms, and that's challenging,' said Sidonio, who is heading a project under the auspices of the International Society on Thrombosis and Haemostasis (ISTH) that has proposed terminology and a conceptual framework for the categorization of hemophilia carriers. According to the ISTH, more accurately categorizing these women 'will ultimately improve communication between providers, researchers, payers, and community members.'
'The current system was too generic and needed some separation,' Sidonio explained. 'We thought if you had [clotting factor] levels less than 40% or 50%, which is the cutoff for hemophilia, we would use the system we use for males. So, If you're a women with mild hemophilia, you have a level of 40% to 50%; for a woman with moderate hemophilia, it's 1% to 5%, and if it is less than 1%, it's severe hemophilia. And if you have levels greater than 50% it is reasonable to use the terms asymptomatic or symptomatic carrier based on your bleeding.'
'So we wanted to create some rational categories that people could utilize, which hopefully help with communication, he said.
For example, he suggested the term 'symptomatic carrier' might be reasonable if a woman has a normal clotting factor level and bleeds. However, if a woman has a level of 20% it may not be reasonable to use the term if it leads a provider to believe the bleeding issue is not serious and that treatment is unnecessary.
Beyond the issue of nomenclature, it can be challenging to adequately diagnose the cause of a woman's bleeding issues.
For women with bleeding disorders their most common symptom is going to be heavy menstrual bleeding."
Dr. Sidonio also mentioned a correlation between FVIII or FIX deficiency and reduced overall joint range of motion.
The article concludes providers should:
- be aware that hemophila carriers can bleed
- validate the experience of their female
- educate and empower hemophilia carries
- be educated about what constitute normalcy when it comes to menstrual bleeding