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…
When you have a bleeding disorder, you are part of a community that becomes family. You never completely leave them, and they never leave you. The disorder binds you for a lifetime. When your bleeding disorder wreaks havoc, you tend to reach out to your bleeding disorder family…
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…
2013 was the year that my mighty warrior Caeleb was in the hospital more than he was at home. and Christmas was a holiday that was spent in the hospital. Instead of feeling sorry for the fact that my son was in the hospital unable to walk, I…
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…
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…
When I am asked how Thanksgiving was for my family, I tell people that my little family ate a feast at home, watched television and relaxed. It was uneventful, nothing exciting. And that is exciting in itself. When you live with a bleeding disorder, your life can be…
Last week, I was on Facebook and a post I had been dreaming about appeared on my timeline. The U.S. Food and Drug Administration has approved a new therapy, Hemlibra (emicizumab-kxwh), for patients with hemophilia A and inhibitors. It’s the first new medicine for inhibitors in almost…
Normal. I’m not exactly sure if I know the definition of normal. I’m thinking that most normal people would probably not suffer from any kind of illness. No allergies, diabetes, pain or infusions would be part of a normal person’s life. When you live with a chronic condition,…
When you live with a chronic illness, it is easy to feel alone. You can get mired in the daily struggle of caring for your loved one, or yourself, and it can quickly become overwhelming. There are days, and even weeks, when life with your illness is manageable,…
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