Focused Health is an extension of our Care Management program. This unique program partners with women and families living with rare diseases and hemoglobinopathies that have the potential to impact reproductive health, pregnancy outcomes, and family conditions. An estimated 7,000 - 10,000 rare diseases affect more than 30 million people in the United States.
Although there is growing awareness, there is still a lack of information and support to meet the needs of families living with hemoglobinopathies such as sickle cell anemia and thalassemia. This is increasingly the case when it comes to comprehensive maternal heath support, before, during, and after pregnancy.
The management of rare and orphan diseases presents specific challenges, including the need for complex and specialized care. These diseases may not be considered a priority in universal health coverage packages and may thus be left out of public procurement and reimbursement (World Health Organization).
The decision to have a child involves emotional, physical, psychological, financial and lifestyle considerations. You may experience a biological urge to have a child or feel influenced by societal norms or your religion. Every pregnancy comes with some degree of risk and deciding to have a child is a leap of faith for anyone. As a woman living with a rare disorder, you have the additional implications of considering how your condition may impact a pregnancy and the degree of risk of passing on your genetic disorder to your children. There is no right or wrong answer. To further complicate matters some women find themselves responsible for the care of both a child and an aging parent who may or may not have the same genetic disease (globalgenes.org).
Johns Hopkins Medicine researchers have further documented an association between a substantially higher risk of maternal morbidity and mortality among those with the inherited blood disorder sickle cell disease, compared to those without it. Their analysis, completed using a large national administrative database with records for pregnant people with sickle cell disease, found the maternal mortality rate was 26 times greater than the national average. This figure has not improved since the last time this population was assessed.
As with our Care Management program, each client receives a personalized experience with resources and services that are specific to their health and well-being. A dedicated and certified care team will partner with you to help you manage your health and wellness throughout the various phases of your maternal health journey.