Why Bleeder is my favorite app for tracking bleeds and factor levels

Tracking factor VIII (FVIII) infusions can be a drag! When I started infusing it regularly to prevent bleeds caused by my hemophilia, I searched for an app to help.

For hemophilia patients, it’s important for our medical providers to have a record of our bleeds and the treatment we’ve been given. I was looking for an app to help me track how much FVIII is in my system at any given time. This helps to identify patterns in my bleeding so that my doctor can tweak the timing and dosage to better protect me. Also, if I injure myself, I want to check my FVIII levels to determine if I need an immediate infusion.

I found a few apps that offered real-time tracking of FVIII levels, but most of them required my hemophilia treatment center (HTC) to sign up for them and then add me. Unfortunately, the staff at my HTC told me that they don’t use apps. So I was looking for something I could use without my HTC having to sign me up. That’s when I found Bleeder, an app created by a fellow “bleeder.” I’ve used it for years, and it’s since become my favorite tracking app.

I use Bleeder to track FVIII because I have hemophilia A, but the app can also be used to track levels of other types of factor.

To track factor levels, users need to know their factor half-life, which is the time it takes replacement clotting factor to decrease by half. A healthcare provider can determine this by performing a pharmacokinetic study.

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A labor of love

Hannes Jung, creator of the Bleeder app. (Courtesy of Hannes Jung)

I recently had the pleasure of interviewing Hannes Jung, the creator of the Bleeder app, via email. Jung, who has severe hemophilia A, works as head of mobile development at the digital agency LOOP in Salzburg, Austria, where he leads a team of Android and iOS developers, project managers, and UX designers. But Bleeder is a project he did on his own. I asked what inspired him to create the app.

“In Austria, we get a little booklet from our doctor that we should keep up to date with all of our [factor infusions],” he explained. “I was always too lazy to do that, or I’d leave the booklet at home or lose the little stickers from the factor vials. I thought that there must be a better way to do this. That’s when I started working on the app, [in order] to easily keep track of [my treatment].”

He said the app’s purpose is to help himself and others.

“I never put any budget into marketing,” he said. “That means I’m operating the app at a loss. The earnings don’t cover the app store costs or the time I spend working on it.”

In other words, Bleeder is a labor of love that he made for the hemophilia community. Designing and developing the first version of it took Jung about two months. He spent another nine months adding more features and updating it — all in his spare time.

The Bleeder app allows users to track factor levels, along with other features. (Courtesy of Hannes Jung)

Jung says his two favorite features are tracking how much factor product he has left and receiving a prompt when it’s time to order more, and tracking an estimate of his FVIII levels. Another feature that’s handy is the ability for users to export and share their “diary.” This creates a record that can be shared with healthcare providers. He adds that managing his illness with the help of Bleeder allows him to spend more time with his new son and enjoy being a father for the first time.

The app, currently available in English and German, also allows users to take photos of bleeds. And he is translating it into more languages, including Spanish and French.

I asked if he had plans to add a feature allowing users to enter their peak factor level in order to help them more easily track factor clearance, which is the process by which the body removes FVIII from the bloodstream. “The factor peak level is a great idea that I didn’t think of yet, but I’ll get on it after the next update,” he told me. He said he is always open to input and welcomes feedback from users.

For me, using Bleeder has been a delightful experience. I hope you find it useful, too.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.