March is Bleeding Disorders Awareness Month.  It’s an opportunity to help spread correct information and greater awareness about the disorder, those who are affected by it, and how it is diagnosed. Spoiler alert: not everyone who will be diagnosed with a bleeding disorder has a family history. Others may be unaware of a family history or may just chalk it all up to a family “idiosyncrasy.” Just ask one of our own, Dawn Mare Bernhard.

 

 

Dawn Marie is Cure 4 The Kids Foundation’s Director of Business Development. She works on many initiatives throughout the year — and is involved in many of the events and fundraisers that support our Charity Care Program, which allow our clinics to never turn away a patient for financial reasons. Dawn Marie began as a volunteer with Cure 4 The Kids before becoming an employee. In 2016, not long after learning she was pregnant, she also learned she had an inherited bleeding disorder — von Willebrand disease.

 

1. How and why were you diagnosed with von Willebrand disease?

One of our physicians noticed some bruising I had from carrying boxes and asked me about it.  After discussing and talking through a few other symptoms, I was encouraged to get tested. One of my coworkers stayed on me about it.  It still took two years for me to actually go through with the testing. Mostly because I thought it was a long shot.

 

2. Your diagnosis must have been a big surprise?

I was completely surprised. I had learned a ton about bleeding disorders through my work with the HTC, but it goes to show you that people write off symptoms and have a tendency to not worry about self-care as much as they should.

 

3. How did this affect your pregnancy?

I ended up having a bleeding issue mid-way through my pregnancy.  The emergency room doctors had no answers and kept telling me that it was a possible miscarriage, even though the baby’s stats were perfect.  Fortunately, because of the diagnosis, I knew to call Amber Federizo, a Nurse Practitioner at the Las Vegas Hemophilia Treatment Center (HTC) and Dr. Alan Ikeda, the foundation’s interim Medical Director, both of whom worked hand-in-hand with my obstetrician to solve the problem. After a few factor treatments and close monitoring, the issue resolved, and the rest of my pregnancy was a normal, healthy one.

 

4. It seems like a coincidence (or is it irony?) that you never knew you had an inherited bleeding disorder, yet, as an employee of Cure 4 The Kids Foundation you often are working with the Hemophilia Treatment Center which treats all bleeding and clotting disorders.

I feel like the universe put me in the right job at the right time to let me discover the issue and to help me with my pregnancy.  It also has brought out a bigger desire to create awareness, advocacy, and support for others who struggle with inherited bleeding disorders, both diagnosed and undiagnosed.

 

5. Are there any ongoing steps you have to take to manage the disease?

Awareness is the biggest step for me.  I am lucky in that unless there is an incident, my day to day is not affected.  However, I know what to look for, what’s not normal, and where and when to seek help.

 

6. Did it ever enter your mind that this disease would be something that would affect you one day?

Not at all! In hindsight, it makes sense, based on symptoms.  There is a history in our family that most of us just chalked up to being us.  Now there are more of my family members that are getting tested.

 

 

Amber Federizo is a Nurse Practitioner at the HTC in Las Vegas. She sees patients in our Las Vegas clinic as well as through the HTC Comprehensive Clinics which are scheduled around the state on a regular basis.

 

1. How often do you come across people who are diagnosed with an inherited bleeding disorder and who have no awareness of any family history?

With hemophilia, 30% of people who are diagnosed have no family history. The general public is led to believe that all hemophilia is royal and came into existence because one queen married her cousin. We all like a good fairy tale I suppose. The truth is it would not have mattered whom she married — her subsequent generations of family members would have been affected. Also, this included only one type of hemophilia. Just a year ago ABC's show Secrets and Lies portrayed hemophilia as a "nasty byproduct of incest." It was 2016, which means we have an uphill battle of education to ensure that the general public understands spontaneous mutation and genetics in general. If we do not address it, we risk continued inappropriate stigmatization and decreased the quality of life for those affected.

 

2. How can someone find out if they may have an inherited bleeding disorder?

While many clinicians can order the tests, I recommend obtaining testing through a clinician skilled in the interpretation. Due to a number of false negatives, many patients are originally told they do not have a bleeding disorder and continue to suffer bleeding. We are happy to test anyone who may be in need with or without insurance.

 

3. Are the symptoms of a bleeding disorder different for men and women?

We used to believe that there were differences. However, this created quite a gap in the care one received based on their gender. The bleeding disorder community is working every day to bridge this gap and acknowledge the struggles that women have faced beyond their periods. There should never be an expectation that a person should bleed in a certain way, as some will bleed more and others will bleed less —  even at the same level of severity. My way of overcoming our professional bias is to strip the laboratory levels of their gender so the dialogue that comes is one of science and not culture.

 

If you would like more information about bleeding and clotting disorders or would like to make an appointment at either one of our clinics to be tested, please contact the HTC in Las Vegas at 702-732-1956 or the HTC in Reno at 775-657-8981. As a program of Cure 4 The Kids Foundation, no patient is turned away from treatment for financial reasons, including a lack of medical insurance or inability to pay.