I had just gotten back from my best friends house. My eyes were red and puffy, and I tried to hide them behind my hand as I ran into my house and down the stairs. The questions to follow if my parents had seen me upset would only make me feel worse. At times like these,…

Happy New Year to the Cure HHT family, friends and supporters! I’m going to drop a quick note as I’m preparing to depart and visit my new granddaughter and first grandchild in Alabama. I’m so blessed to be strong enough to travel. My daughter’s pregnancy and delivery was successful and there were no issues or…

The past few months have been such a challenge and very difficult. At last check, my blood levels were an 8.7 and dropping. My iron saturation is below the lowest and I’m definitely not creating any hemoglobin (blood). I’m well aware that they have most likely dropped even more, and I need to verify this,…

As high school volleyball season quickly approached, I tried my hardest to get in shape before practices began. I found this yearly task was more difficult than I remembered. The first day of practice hit me hard. The training hardly helped at all, and before long I was lagging behind everybody else. I pushed on though…

However, looks can be deceiving… I, unfortunately, missed a blog entry last month and the opportunity to share with my HHT family. This was due to my inability to function at a normal level. The intravenous treatments I was receiving were abruptly changed in January of this year and I have been on a large…