"My mom has a family history of hemophilia, and she knew she was a carrier, so she asked my doctor to test my factor levels. When the test results came back, I was diagnosed with severe hemophilia A. My identical twin sister, Madison, was also tested, but her factor levels indicated she didn’t have severe hemophilia. Fun fact: we were written about in a hematology journal as the first case of identical twins where one was diagnosed with severe hemophilia and the other was not.

I often felt different because of my bleeding disorder. I felt less out of place when I spent time around other kids with hemophilia. My mom is an incredible advocate; from an early age, we were active in our bleeding disorder community.

For many years, I was on a recombinant factor. When I was around 22 years old, I went on a factor mimetic treatment and supplemented regularly with factor for bleeds. Then one day in May 2024, I woke up with the taste of blood in my mouth. I went to the doctor, and he said I needed a partial tonsillectomy. After the surgery, I kept bleeding because I didn’t have the factor I needed. I woke up in the ICU with a tube in my throat. My mom flew from her vacation in Aruba to Orlando to help advocate for me when I was unable to advocate for myself. I eventually got the factor I needed, but I was in the hospital for nearly 2 weeks.

I had my yearly appointment with my hematologist the day after I was discharged from the hospital. I learned that ALTUVIIIO is a once-weekly prophylaxis Factor VIII therapy, and that it was shown to keep factor levels higher for longer—over 40% for most of the week—in adults. I liked that I’d only have to infuse with ALTUVIIIO once a week and that it had a longer half-life. My mom went with me to the appointment, and we discussed ALTUVIIIO with my doctor. We agreed that ALTUVIIIO could be a good fit for me, and I started ALTUVIIIO in May 2024.

Some of my favorite activities are going to concerts and theme parks. At a recent concert, my favorite member of my favorite boy band walked to the edge of the stage at the end of a song and handed me his tambourine! When I have days where I don’t want to infuse, and think, ‘Why was I born with this condition?’—I’ll look at the tambourine hanging on my wall, and tell myself, ‘This is why I need to do my infusions. A bleed could potentially prevent me from taking part in experiences like this.’

As a woman with severe hemophilia A, I’ve often felt out of place. But my experiences taught me how meaningful it is to belong and to help create a feeling of belonging for others, too.”

Morgan is a promotional speaker compensated by Sanofi. Peer stories based on data collected March 2026.

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