So this is my first post on this subreddit so I'd like to introduce myself. I am 25 years old, 5'5" male, with a slim body frame turning 26 in June and have been diagnosed with Hemophilia A since birth (My older brother has it but after checking family lineage, no one from my mother's line had it that anyone currently alive can remember). Throughout my childhood ( I unfortunately did not have one) I suffered from chronic bleeds. I could not play outside because every time my head or nose would get warm, not hot but warm.. I would immediately bleed. The remedy was easy. Pinch your nose, lay down and relax for 5 complete minutes. Don't move, just pinch your nose with ample pressure and then let go slowly as you release your fingers so the blood clot does not tear causing a bleed again. That method worked but it was a constant battle for years. Every single day, multiple times a day.. It affected my ability to do many daily activities. Later down the line, those nose bleeds stopped and then my body decided to come after my joints (elbow and ankle). I managed the internal bleeding (inflammation) using Factor XIII recombinant. A normal cut on the hand would take about two to three days to heal and a swollen joint would take three to four days to heal. By the time I was 23 years old, not only was Factor XIII not as effective but I was diagnosed with osteoarthritis as well as synovium build up in my right ankle. Synovium is a fluid that develops in your joint and eats away your cartilage slowly. The pain turned me into a cripple and the Factor XIII did not heal me as effectively anymore. After research and recommendations, I opted for surgery. On June 16th, I underwent a procedure known as subtalar joint fusion.

"The subtalar joint is located just below the ankle joint between the talus bone and the calcaneus (heel) bone. The main job of the subtalar joint is to allow for side-to-side movement of the foot and ankle. This movement aids in walking, especially on uneven surfaces.

A fusion surgery locks bones together and is appropriate for diseased joints that can’t be replaced. Once a fusion heals together, it acts as one unit and can restore function and provide significant pain relief. Generally speaking, fusion also is very durable.

Subtalar fusion is performed to either correct rigid, painful deformities or instability of the subtalar joint, or to remove painful arthritis of this joint. During surgery, this joint between the talus bone above and calcaneus bone below is removed as the joint surfaces are fixed together. The goals of subtalar fusion are to decrease symptoms and allow improved function with less pain" - Footcaremd.org

I do not have inhibitors and dosage was adjusted every few years based on my body weight so it is not that Factor XIII was completely ineffective due to being immune to it after a long time. I decided for myself that there are better infusions out there so I decided to ask. My Hematologist recommended Hemlibra and so I did my research. I asked my Hematologist the feedback regarding Hemlibra from other Hemophiliac Hemlibra users as well. She told me that many have gave positive feedback. One of those is regarding the infrequent dosing (only once a week). Hemophiliacs are required to give prophylaxis which goes based on the half-life of the factor being given. The half-life for Factor XIII in my body is 12 hours meaning if I give it at 12am on Monday, by 12pm on Monday it will be at 50% then 12 hours later it will be 25% then 12% and then anything below that is useless and your body cannot heal. So give or take within 48 hours, there is barely any left in your blood. The half-life of Hemlibra is a few days however. Hemlibra is only to be taken once a week and your body will have 30% of factor at all times unlike Advate which you have to take every 48 hours for prophy(It was such a drag..). I was told that even though I will be on Hemlibra, if there is any serious bleed, I should also take my Advate if necessary otherwise I would not need to and so I switched! So far have completed 8 weeks of Hemlibra. Not a single dosage of Advate was given during this time. I feel great, no side effects and I only have to infuse myself x1 a week ( I chose my thigh). If you are experiencing pain, please do NOT take Ibuprofen. Only Acetaminophen is allowed due to Ibuprofen affecting the platelets in your blood. Hemophilia and the care you need to give yourself definitely takes a toll on your physical health but also your mental health. I hope you and your families are all doing well during this pandemic and just know that even though there is no cure, there IS ways to live a better life.

As time goes on, I will keep updating this post with how Hemlibra is going on a 3 month time span. If anyone has questions or needs help, I will help you no matter who you are, male or female. Just ask :)

I would also like to note, I have left over Advate infusions ( 2000 UI) in the box that I have not used. I donated my old Factor XIII to patients before who could not get access to them. I am willing to donate them to you if you are having issues getting the treatment due to insurance coverage or other reasons. Please get in touch.

Edit 1: It is now July 12, 2022. I have only given one dose of Advate as of now due to an injury I caused. So far Hemlibra is still proving to be as effective as it was a year ago.