Sharing My Knowledge to Help Someone With a New Diagnosis
A friend called to tell me her teenage daughter finally received a diagnosis of mild hemophilia.
Her daughter experiences bleeding complications and had been seeking a diagnosis for more than two years. While it is a relief to have one, it is another story to figure out what the diagnosis means. Raising two sons with hemophilia has given me more than 25 years of experience. There is so much to learn, and knowing where to start can be overwhelming.
One thing I told my friend was to get a travel letter as soon as possible.
A travel letter is a document written by a physician that details a person’s condition and treatment plan. Having an official letter can bring comfort and reassurance when traveling. If a person with a bleeding disorder is away from their regular physicians, going to an emergency room can be trying, because the clinicians wouldn’t know a patient’s history, and might not have experience treating a person with hemophilia.
Since my friend lives in a rural community and is more than 90 miles away from a major hospital, I told her that having a travel letter is crucial because smaller hospitals do not always understand the intricacies of hemophilia. Even medical staff at hospitals in big cities do not always understand it.
Before I learned how to infuse, taking clotting factor to the emergency room was the fastest way to get it into my son when the hemophilia treatment center was not open. I was told to be persistent and tell the clinicians that my son needed to be infused immediately. That was not easily accomplished, unfortunately, because medical personnel didn’t seem accustomed to contending with someone who was insistent and knowledgeable.
Having a travel letter in hand proved helpful when I could not provide the care my son needed. When I needed to have my son infused, I quickly realized that I needed to speak up and become an advocate in ways I never imagined.
One of the most empowering parts of living with a rare disorder is having experiences to share with newly diagnosed patients. The moment a person shares their diagnosis with me, I am transported back to 1996 and 2006, the years my sons were diagnosed with severe hemophilia A. I remember the fear that consumed me as I began to consider the implications of a rare bleeding disorder. There was so much to learn.
I am glad to have the tools to help the newly diagnosed. So often, they need to hear from people with personal experience. My friend’s phone call took me back to when I did not know how to even spell hemophilia. I will walk alongside her and help her figure out life with this disease.
Sharing the journey is not always about offering information. Sometimes it is simply about listening and being available. So, I give thanks to the ones who listened to me over the years. I will continue to listen and offer a sympathetic ear.
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, and are intended to spark discussion about issues pertaining to hemophilia.