Why Learning About Hemophilia Is Important for Young Women & Girls

Before meeting Kate and Corinne of the National Hemophilia Foundation, my Queasy Queen persona was in full force. Despite being in the business of all things period blood, my mind starts to go foggy and stomach starts to churn when I think of anything as unassuming as a papercut. My symptoms started to rise as I wrote notes before the interview, periodically taking breaks in between. This tempo frustrated me-- why was I letting my troubled relationship with period blood effect my research and knowledge about it?

 

It was during my preparations that I realized Kate and Corrinne must deal with plenty of hesitancy when trying to educate people like me about blood disorders. Working in the education department, one of their primary duties is to educate the public about signs and symptoms of hemophilia, an incurable (but treatable) condition where blood has a more difficult time clotting. Talking about symptoms and methods of treating it, specifically with young women, could be considered taboo to some. Then there are people like me, who get so flustered talking about blood that they’d rather avoid the subject altogether (I'm workin' on it.) I’m pleased to report that Kate, Corinne and I talked about hemophilia and other blood disorders and it was truly a discussion worth having (and I didn’t even faint)! I encourage you to learn more about hemophilia, the symptoms, and taboo-breaking methods for young girls and women.

 

What is hemophilia and who is affected?

 

For starters, there are 2 different types of Hemophilia: A and B. Hemophilia A is 4 times as common as B. Hemophilia A is often referred to as “classic hemophilia”, and is a genetic disorder that makes it challenging for blood to clot normally. All races and ethnicities are affected, and there are approximately 20,000 people with Hemophilia in the United States, and 400,000 worldwide. von Willebrand Disease (VWD) that is the most common bleeding disorder overall. Up to 1% of men and women in the US are estimated to have VWD.

 

 Symptoms and Diagnosis

 

(To all my fellow queasies-- take a deep breath and have a quick glass of water!)

 

Kate and Corinne were quick to let me in on a common struggle with VWD -- it can be very challenging to diagnose. Hemophilia, however, is straight forward. What has been starting to change is that providers are now testing women who historically were just thought of as carriers of the gene to see what their factor levels are, so they too now may get a hemophilia diagnosis.

The more obvious signs can be bleeding longer than normal and having a difficult time clotting, or noticing unexplained bruising. They said it can be especially hard for women, who can have different symptoms than men, and can get their symptoms written off as “a heavy period”. For young girls starting their periods, it can be extremely challenging to decide what is a “normal” period, as they’re not yet in sync with their cycle and flow. “It’s difficult to tell a girl or woman what is a ‘normal’ flow, so it’s important to closely pay attention to women's symptoms,” Kate told me. THINX certainly knows this well, which is why we created #knowyourflow-- because each flow is different, meaning every women will have a unique experience with their THINX.

Another key issue Kate and Corinne warned me about is that it’s common for doctors to treat the individual symptom but not the hemophilia itself, as it can be disguised as other issues. You can review The National Hemophilia Foundation’s guide of plasma levels in relation to hemophilia (being mild, moderate and severe) here.

 

What treatments can you use?

 

While hemophilia does not have a known cure, there are treatments that can help. The type of hemophilia you have (whether it be mild, moderate, or severe) will have a direct impact on your treatment. For hemophilia A, you’ll often use injections for hormone desmopressin (DDAVP). Regular infusions are used for ongoing treatment. Clot-preserving medications, fibrin sealants, and physical therapy are also used for ongoing treatments, depending on your severity and where you’re having the biggest issues (if internal bleeding is damaging your joints, for example, physical therapy would be the best route). You can learn more here.

Kate and Corinne filled me in on some methods being used that have been considered taboo, especially surrounding the treatment of young girls.

“Birth control can be an option,” Corinne told me, “but that can be somewhat controversial, even though it’s to help lighten the period flow and make the periods more regular.”

“We’ve spoken to women who have periods 3 weeks out of the month,” Kate said. “So it’s understable that women would want birth control as a potential option.”

When I commented about the similarities in both of our jobs, specifically informing and engaging the public on a topic they've been conditioned to find gross or uncomfortable, they agreed. "One of our favorite parts of the job is showing support and care to young women who are experiencing blood disorders and heavy periods for the first time," they told me.

 

Wow, Kate and Corinne sound really informative and kind-- who are they and what do they do for the National Hemophilia Foundation?

 

So glad you asked, reader!

Corinne Koenig is the Manager of Education and Training overseeing NHF’s programming for women with bleeding disorders and those with von Willebrand Disease. Corinne creates and facilitates in person workshops for consumers, as well as develops print materials and web content to meet the needs of these women and men. She loves it and is passionate about empowering women in their health care, to have a voice with their providers and to connect with others going through the same thing.

Kate Nammacher is the Director of Education, overseeing all of NHF’s educational programming for anyone living with a bleeding disorder, from conferences to families impacted by challenging complications of bleeding disorders to three websites with videos and interactive content. Kate is especially excited to be working on NHF’s Better You Know campaign to truly address an unmet public health need, letting women learn more about how their symptoms may actually be signs of a bleeding disorder, allowing them to have a better quality of life.

They  want women to know that heavy periods longer than 7 days are not worth overlooking! They can be a sign of many different things, one of them being a bleeding disorder. If women feel that something is off, they should trust their gut and seek care. It can be overwhelming to try to figure it out, so betteryouknow.org has been set up to easily set women on the path to better care and feeling better.

 

How can we learn more?

Kate and Corinne recommend you check out The National Hemophilia Foundation online to learn more about Hemophilia and other blood disorders. You can learn about events, educational programs, and how you can get involved in the fight for visibility. They even have checklists available so you can see if you show signs or symptoms of hemophilia!  There is also a section specifically on women with bleeding disorders including symptoms, testing and diagnosis, and management.

 

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