I found this page while searching about my hemophilia diagnosis.
My Name is Cindy Nogueras, 28, from Puerto Rico. Back in July 2023, while I was unknowing fighting for my life was diagnosed with Hemophilia factor XII also known as HAF deficiency, Hageman factor deficiency, Hageman trait. Factor XII deficiency is a rare genetic blood disorder that causes prolonged clotting (coagulation) of blood in a test tube without the presence of prolonged clinical bleeding tendencies.
It is caused by a deficiency of factor XII (Hageman factor), a plasma protein (glycoprotein).
The condition caused bleeding in my knees which has left me temporarily in a wheelchair, and stiff leg which can’t stretch due to the loss of the meniscus and cartilage.
This condition is also accompanied by agammaglobulinemia, which means I don’t have the protein which creates the immune system, and I will be having infusion for the rest of my life to treat it.
Although I Was mostly in and out of the hospital growing up, no one ever knew why, once I had a bad fall no one couldn’t tell me why my meniscus and cartilage were getting wear out. Until May 2023, I ended up in wheelchair with a bad pain and bad cramp from leg to knee, my rheumatologist sent me to emergency in suspicion of a sepsis on my knee.
I stayed in the hospital for about 19 days, 4 days in emergency room and 15 days up in a room, with many doctors and specialists visiting, from cardiologists, rheumatologists, orthopedics, hematologists, internists, immunologists and there they found my hemoglobin was in 4 and dropping, a bacteria in my blood, the hemophilia and the agammaglobulinemia.
Although I know neither have a cure, and will always be a part of me, I haven’t stopped doing what I love, I go to events of cosplay, work related events, and my photography hobby. Even if I can’t work now at what I got a degree on, I’m happy to be alive and continuing what I’m doing, with my family supporting me through this journey, mentally and physically.
health insurance doesn’t cover everything but we do everything we can to deal with it.