March is Bleeding Disorders Awareness Month. Those with bleeding disorders such as Hemophilia can range on a spectrum from light to severe, with many being diagnosed in infancy. Bleeding disorders often require complex and coordinated care, with social workers and healthcare professionals working together to improve patients quality of life.
Treatments and therapies must be coordinated to work with everyday needs such as school and work for the most successful outcomes.
Types of Bleeding Disorders
Bleeding disorders encompass a large number of blood-related defects and deficiencies that can affect persons in a variety of ways. The most common disorders include:
- Hemophilia – a lack of coagulant severe limits the body’s clotting ability, making minor injuries quickly become severe.
- Hemophilia A (Factor VIII [FVIII] deficiency)
- Hemophilia B (Factor IX [FIX] deficiency)
- Hemophilia C (Factor XI [FXI] deficiency)
- von Willebrand’s disease – characterized by a low level of clotting protein in the blood
- (types I, II, III, aVWS, and pseudo-VWD)
- Factor Deficiencies – the body is missing one or more of the specific clotting factors below
- Factor II (FII) deficiency
- Factor V (FV) deficiency
- Factor VII (FVII) deficiency
- Factor X (FX) deficiency
- Factor XII (FXII) deficiency
- Idiopathic thrombocytopenic purpura (ITP) – a low platelet disorder that can lead to excessive bleeding or bruising
- Acquired platelet function defects – platelet issues that are not present at birth and appear later in life.
- Congenital platelet function defects – referring to platelet disorders present from birth
- Congenital protein C or S deficiency – referring to blood protein disorders present from birth
- Disseminated intravascular coagulation (DIC) – unlike many other blood disorders, this issue is related to overactive, not underactive blood proteins
- Glanzmann disease – a bleeding disorder characterized by platelets with low or defective levels of glycoprotein
A marked trait in all bleeding disorders is uncontrolled or difficult-to-control bleeding which may be triggered by various internal and external factors. In the case of many blood disorders, this essentially means your blood cannot clot on its own. Blood disorders are often associated with platelet issues and genetic or familial tendencies.
Living with Blood Disorders
Living with blood disorders can be painful at the least, and life-threatening at the worst. Workers with bleeding disorders or those caring for dependents with bleeding disorders can require extensive care for these chronic conditions. It’s important to have access to the correct paperwork for the Family Medical Leave Act (FMLA) and the American with Disabilities Act (ADA) as these conditions dictate.
Places of employment and schools need to understand both the abilities and limitations of those with bleeding disorders, so it’s important to advocate for patient health both inside and outside the home.
Blood Disorder Advocates
To support these courageous fighters, it is important to advocate and share awareness of life with blood disorders. There are many ways you can be involved and be active. Share information about Bleeding Disorder Awareness Month (BDAM) on your social profiles. Add a profile frame or share one of BDAM’s “Facts of the Day.” Join community outreach and support groups like these ones listed with the Hemophilia Federation of America. You can volunteer to train as a relief caregiver, cook meals, or even provide some quality company to those who are stuck at home or in the hospital — discover more information online!