A bleeding disorder means the blood does not clot properly due to a deficiency of clotting factors.
Bleeds can occur anywhere inside or outside of the body. Bleeds on the outside of the body are much easier to identify as signs are visible (i.e. blood, purple and/or dark blue bruising, swelling, etc.)
Signs of an internal bleed may include: swelling, redness, pain, warm to the area, decreased mobility in extremities, bright red or tar-like, black stool (Gastrointestinal bleed), confusion, blurry vision, slurred speech, headache, etc. (Brain bleed)
Not all individuals with a bleeding disorder require medication.
Medication will depend on the type of bleeding disorder and the severity.
We are able to provide any clotting factor that has been approved by the FDA and is available on the market.
HOC coordinates with patients to obtain the medication needed whether patients get the medication through HOC or a Specialty Pharmacy (dependent on insurance).
Each patient will be seen based on their specific plan of care. All patients under the age of 5 are seen every 6 months or more often as needed. The majority of patients are seen once per year and as needed.
HOC provides 24/7 On-Call Coverage. Patients will call HOC’s main number (920-965-0606) and an answering service will take your information and page the on-call nurse/ physician who will call you within 15 minutes.
HOC is not currently participating in any clinical trials. If this is something patients feel strongly about participating in, please speak with one of HOC’s Registered Nurses.
HOC does participate in observational studies. Our Nurse Coordinators would be happy to discuss all available opportunities at the patient’s next visit.
Call the Hemophilia Outreach Center (920-965-0606). Our staff will be happy to assist in getting scheduled.
Looking for an easy way to log bleeds and keep track of your prophy schedule? The MicroHealth app is a great option! With this app, a patient is able to log infusions and bleeds, set reminders for prophylactic treatment days, and connect with the HOC nursing staff for non-urgent needs. With a smart device, a patient can scan the factor barcodes to make it easy to log infusions. Once an account is created, search for your treatment team (Hemophilia Outreach Center Nurses) to be able to connect with the nursing staff.
**As a reminder, for emergent needs patients should call the clinic or on-call nurse as the nursing staff needs to check MicroHealth for messages, and we may be unable to immediately respond to messages.
The National Hemophilia Foundation offers an informative website, Steps For Living, that guides individuals through the ages and stages of growing up with a bleeding disorder.