Dear Jen, 

My son has hemophilia B, and I think I do, too, but I can’t get my doctor to take me seriously. What do you suggest?

Signed,

Frustrated Mom

Dear Frustrated,

It can be incredibly frustrating as a woman when you suspect that you have hemophilia, but your concerns are not being taken seriously by your doctor. However, advocating for your health is essential, especially when dealing with a condition that can have serious consequences if left untreated. Here are some steps you can take to ensure that your concerns are addressed:

Educate Yourself

Before approaching your doctor again, take some time to educate yourself about hemophilia B and its symptoms in women, which are probably different from what your son experiences. For example, women commonly deal with heavy periods and hemorrhaging after childbirth. 

If your doctor doesn’t think hemophilia affects women, gather information from reputable sources such as medical websites, The Coalition for Hemophilia B, and scientific journals. By arming yourself with knowledge, you can better articulate your concerns and advocate for appropriate testing and treatment.

TIP: Hemophilia B: Her Voice, Her Life is a book from Pfizer that provides support and encouragement to women with hemophilia B.  DOWNLOAD

Document Your Symptoms

Keep a detailed record of any symptoms you are experiencing that could be related to a bleeding disorder and take photos. This may include frequent or prolonged bleeding, heavy menstrual bleeding, easy bruising, joint pain or swelling, or excessive bleeding after minor injuries or surgeries. Anemia and iron deficiency are also important symptoms, especially in women.

Providing your doctor with specific examples and timelines of your symptoms can help them understand the severity and frequency of your bleeding episodes

Seek a Second Opinion 

Make sure you're seeking an opinion from a hematologist at a federally funded Hemophilia Treatment Center (HTC). If your current doctor is not taking your concerns seriously, consider seeking a second opinion from another healthcare provider at a different HTC. A fresh perspective from a different medical professional may lead to a more thorough evaluation of your symptoms and concerns.

TIP: Doctor David Clark writes of interesting conclusions regarding hemophilia B carriers from a study in Belgium. CLICK TO READ

Advocate for Testing 

Be persistent in advocating for appropriate testing to determine whether you have hemophilia B or another bleeding disorder. This may include blood tests to measure your clotting factor levels, genetic testing to identify any underlying genetic mutations, and imaging studies to assess for joint damage or other complications. Don't be afraid to ask questions and request specific tests based on your research and symptoms.

Seek Support

The Coalition for Hemophilia B can provide valuable resources, support, and guidance as you navigate the diagnostic process and advocate for your health. Connecting with others who have similar experiences can also help you feel less alone and more empowered to speak up for yourself.

Consider Genetic Counseling

If you have a family history of hemophilia B or suspect that you may carry a genetic mutation associated with the condition, consider seeking genetic counseling. A genetic counselor can help you understand your risk factors, interpret any genetic test results, and make informed decisions about testing and treatment options for yourself and your family members.

Document Your Interactions

Keep a record of your interactions with healthcare providers, including dates of appointments, discussions, and any recommendations or referrals made. If you encounter resistance or dismissal of your concerns, document these instances as well. Having a written record can be helpful if you need to escalate your concerns or seek assistance from another healthcare professional

TIP: Keep copies of all of your medical tests. It is important you keep your own file. I learned this the hard way when my hematologist retired and my file was lost.

Overall, it's important to advocate for yourself and persist in seeking answers and appropriate care for your suspected hemophilia diagnosis. Don't hesitate to seek out additional support and resources to help you navigate this challenging process. Remember that you deserve to have your concerns taken seriously and to receive the medical care and attention you need to manage your health effectively.

With love and gratitude,

Jen

About Jen

Jennifer is an entrepreneur whose passion for digital marketing and technology is matched only by her profound connection to the bleeding disorder community. Diagnosed with hemophilia B and Von Willebrand’s disease at a young age, Jennifer’s journey fuels her passion for advocacy and awareness.

A University of Wisconsin, Madison graduate, Jennifer holds a dual BA in marketing and journalism. Originally from Brookfield, Wisconsin, Jennifer now enjoys the sunny ambiance of Punta Gorda, Florida. Through her advocacy efforts, she aims to amplify the voices of those affected by hemophilia and other bleeding disorders, with a special emphasis on empowering women. Her column, Ask Jen, reflects her unwavering dedication to making a meaningful impact in the lives of others.