If your family has just received a diagnosis of fetal and neonatal alloimmune thrombocytopenia (FNAITFetal and neonatal alloimmune thrombocytopenia A rare condition in which a mother’s immune system attacks fetal platelets, leading to dangerously low platelet levels before and/or after birth.), and you’re unsure of what comes next, getting involved in advocacy is often a great place to start.
FNAIT patient advocates are individuals or groups who provide direct patient support, raise awareness of the disease and advocate for improved diagnosis and treatment. Navigating an FNAIT diagnosis on your own can be extremely challenging, and working with advocates can help alleviate some mental strain by guiding you through your next steps.
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What is the role of a patient advocate?
A patient advocate, sometimes known as a healthcare advocate or patient navigator, is a person who helps to lead you through complex care systems. Your advocate is on your side, communicating with your providers, helping you make appointments and providing legal and financial support.
Anyone can be a health care advocate, including a friend, a relative or a health care professional. Patient advocacy can even be a full-time career. Many hospitals employ patient advocates, and some individuals work as independent patient representatives.
Joining a patient organization
Getting involved in a patient organization is easy. All you need to do is contact an organization, introduce yourself and your story, and express interest in joining. If you don’t know what support you need from the organization at first, that is completely fine. As you spend more time connecting with others, you should quickly discover what resources are most helpful to you.
Currently, only one patient organization exists that is entirely dedicated to FNAIT: Naitbabies. Naitbabies is a United Kingdom-based organization designed by and for families with a diagnosis of FNAIT. Created in 2011, the organization offers assistance to families, supports ongoing research efforts, and educates the public.
Read more about helpful links and resources for FNAIT
Though not focused specifically on FNAIT, the Fetal Health Foundation supports families affected by various fetal syndromes. They also provide up-to-date information on fetal diseases and fund research.
The Allo Hope Foundation, which was founded in 2019, works with patients worldwide to improve care, provide education and conduct research. The Allo Hope Foundation mainly focuses on hemolytic disease of the fetus and newborn (HDFN), a related condition to FNAIT, but some resources may still be helpful.
Becoming your own advocate
Self-advocacy is a powerful way for you to gain more control over your health care decisions and feel more confident asking for what you and your baby need. In order to become your own patient advocate, you should:
Be prepared: In the days before your appointment, keep a running list of any questions or concerns that you think of. Try to sort them in order of importance, as you might not have time to ask every single question on your list.
Take notes: Sometimes, your doctor will allow you to record your appointment so you can listen back to it. If not, you can take notes on your phone or in a notepad. If you find it difficult taking notes while talking with your doctor, consider bringing someone to your appointment to help you out.
Consider alternatives: If your current provider isn’t properly addressing your needs or you simply want to explore other options, you always have the right to do so. You can ask for a referral or consult online resources to find another provider.
