As a rare immune disorder, fetal and neonatal alloimmune thrombocytopenia (FNAIT) is not widely known and the unexpected onset during pregnancy or in the newborn can be stressful for families. Sharing your FNAIT story can be empowering, as your experience can benefit others and help you process the affect this disease has had on you and your family.
What is FNAIT?
Fetal and neonatal alloimmune thrombocytopenia (FNAIT) is a rare but serious condition that affects 0.1% of pregnancies in which a pregnant mother’s immune system produces antibodies against the platelets of her fetus. This occurs when a fetus inherits platelet antigens from the father that are not compatible with the mother, typically involving a protein called human platelet antigen (HPA). The mother’s immune system recognizes the fetal platelets as foreign, attacking and destroying them, leading to low platelet levels (thrombocytopenia) in the fetus or newborn.
Preparing to share your FNAIT story
The tone, format and angle of your story will differ depending on where your story will be featured. When writing your story, be sure to include details of timelines, symptoms, treatments, outcomes and the impact on you and your family. Include tips and encouragement to those going through the same experience.
Find more helpful links and resources for FNAIT
Before you start writing your experience of FNAIT, it’s a good idea to create a plan. To do this, you may want to find out what kind of audience you want to reach and set specific goals and intentions.
Here are some questions you can ask yourself throughout the writing process:
Consider your audience
- Are there any medical terms that need to be explained?
- What information can you share to help them navigate their personal FNAIT journey?
- Are you balancing the negative aspects so I don’t create additional stress for others?
Define your objective
- Do you want to give advice and support to families in similar situations to help understand symptoms and possible outcomes?
- Do you want to raise awareness of FNAIT?
- Do you want to advocate for prenatal testing?
- Do you want to share your experience to help the healing process?
Identify your goal
- Is this a one-off article or do you want to begin putting out regular content?
- Do you want to get involved in support groups or advocacy?
- How personal do you want to make it?
Decide if you want to reveal your identity
- Do you want to be identifiable in the story?
- Do you want to change names or your family, friends, healthcare team and hospital?
- Do you want to share your contact details so people can reach out?
Where to share your FNAIT story
You may choose from several channels of communication to share your FNAIT experience.
Patient advocacy organizations and news outlets are a valuable source of information, support and advice. Shared experiences offer an insight into the reality of having a sick baby, learning about FNAIT and navigating treatment and recovery. Here are a few suggestions:
Rare disorder organizations run congresses where they often invite patient advocates or ambassadors to speak about their experience. For example:
Online support groups will involve a more interactive sharing of your experience. You story will hold valuable advice for families living through their own FNAIT situation. You will receive questions and requests for advice and more information.
One example is Naitbabies, which features both a Facebook group and a 24/7 online parents support group.
Blogs and social media are also good forums for sharing personal stories. Use your own accounts or look for the use of hashtags that may create links within communities of FNAIT patients and healthcare professionals.
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