With the Second Diagnosis Came Depression

First in a two-part series.

I had never heard of hemophilia until the doctors came into my hospital room the day after my first son, Julian, was born. I soon learned that about two-thirds of those diagnosed with hemophilia are because of a spontaneous mutation. Simply put, a spontaneous mutation happens for no reason. It’s like being the winner of the lottery, except this diagnosis can hardly compare to winning large sums of money. I had no reason to think that Julian was anything other than a spontaneous mutation.  

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Tips for Managing Your Bleeding Disorder in the New Year

When you have a year that is best left in the past, ushering in the new year is a time of celebration. You start with a clean slate and an attitude of hopefulness for what is yet to come.

For many years I based the quality of a year on how many times hemophilia and an inhibitor disrupted our lives; how many hospitalizations, days missed from school, and events canceled were significant in the lives of my family. I even thought about how many times we were infusing and how many products we would need to control a bleed. 

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7 Tips for Holiday Travel Success

When you have a bleeding disorder and you are traveling, there are many things to remember. Forgetting factor or Huber needles can leave you in a bind, because these are not items that are easily found at your local drugstore. Making a list and keeping it handy, regardless of how experienced you are with your bleeding disorder, is always a great tool.

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Mama Bears and Warriors: Tears and Joy

Buckets. Buckets and buckets of tears. That’s the only way I can describe the tears I have shed over the years because of living with hemophilia in my home. Both of my sons have had their own struggles with hemophilia and inhibitors, and the tears I have shed have been a response to the various aspects of what hemophilia and an inhibitor can do to a person’s life. I would never wish an inhibitor diagnosis on my worst enemy.  To read the rest of this column, click here.

Something New: Welcoming a New Product to the Family

The hemophilia landscape is much different today from 21 years ago, when my first son was born. There were not many choices in products and they all seemed to do the same thing — help with clotting when the body needed it. Over these years, we even went through a factor shortage. I remember hearing stories about people not having enough factor when it was desperately needed. Fortunately, we had what we needed and were not affected. But when I think back to that time, I was naïve about the enormity of the situation.

Read the rest of the column at Hemophilia News Today.