When I was first diagnosed with fetal and neonatal alloimmune thrombocytopenia (FNAIT), I barely understood the diagnosis myself, let alone explaining it to other people! Even though it has now been five years since my diagnosis, I still struggle sometimes to explain FNAIT to friends, family and unfortunately, even medical professionals, when establishing care at first appointments.
It can be frustrating to have to explain a complicated rare disease, but over the years, I have found an easier way to describe it.
Start with: ‘I have a rare blood disease’
I have a very large extended family, and for the most part, they have learned about my high risk pregnancies from to my Facebook posts and word of mouth from other family members. Last summer, while attending a family reunion, I had many loved ones mention that they had heard about my high risk pregnancies but were curious about the details. The first thing I say when answering these questions is I have a rare blood disease that only affects me while pregnant.
My platelets attack my baby’s platelets
Following that statement, I then explain FNAIT in the simplest way I know how: by saying my platelets attack my baby’s platelets. I know it isn’t the most correct or scientific way of explaining FNAIT, but it is simple and gets the point across! I then explain to them what happened with my first delivery, how my daughter was born with only 11,000 platelets and how she had her platelet transfusion the same night of her birth.
Explaining my pregnancies with and without an FNAIT diagnosis
I went through my first pregnancy and delivery without an FNAIT diagnosis, which resulted in an incredibly scary birth experience. As for my second pregnancy, my FNAIT diagnosis came when I was around 24 weeks gestation. Although the diagnosis added a new level of stress to the pregnancy, it also came with the medical interventions needed to keep my second baby safe. After weekly IVIG infusions, my second delivery ran smoothly, and my son was born healthy with no complications.
Personally, I don’t go into more detail than this when explaining to others what FNAIT is and how it affected myself and my children. It can be frustrating to have to explain to others for what seems like the rest of your life about the rareness of FNAIT, but I also know it is crucial in finding other parents out there who understand and need to know if they too have FNAIT.
Even though I am done having kids, I make it a point to always include my FNAIT diagnosis when filling out medical paperwork. Almost every single doctor has had to look up what it is and I have also had to explain it to them. I hope that by doing so, doctors and medical professionals will hopefully be able to diagnose others faster in the future.
