My Rare Disease Journey With Hemophilia

by | Dec 1, 2022 | Blog, My Writings

Most of my “medical resume” musings from the patient perspective have been about living with HIV. That’s why I am excited to be contributing to RareDisease.Net, where I’ll be sharing thoughts on a lifetime of lessons living with a bleeding disorder (Hemophilia A).

My experiences with a medical condition before my HIV diagnosis at age 11 taught me a lot, and the older I get the more I recognize how the pieces of my medical puzzle fit together. The first decade of my life, the red alarm bells were always hemophilia-related. HIV stole the show for awhile, but the last decade all of my medical drama has been due to my bleeding disorder. Which forced me to be more proactive in how I deal it.

Being in a consistent and comfortable place with HIV- my viral load has been undetectable for two decades- gave me the space to recognize some of the areas that need improvement where hemophilia is concerned. As always, I’m thankful to be here and want to be my healthiest. I’m fortunate to have such a loving partner in Gwenn, friends with hemophilia that I can talk to and a wonderful healthcare team at UVA.

So, without further ado, here is my first article for RareDisease.Net. Published on World AIDS Day, I guess that’s hemophilia’s way of telling HIV, “Hey, I was here first, don’t forget that!”:

Hope you enjoy reading it as much as I did writing, and I hope this finds you well!

Positively Yours,