I’m thrilled to share that #MadameNoire has published a #necrotizingenterocolitis piece I worked on in collaboration with the #NationalBirthEquityCollaboration’s Susan Perez & Afua Nyame-Mireku!
The article discusses surviving #necrotizing enterocolitis, understanding my mom’s experience with the healthcare system as I began to navigate it myself as a #Black female #raredisease patient, and NEC’s disproportionate impact on Black infants.
The #Black community *needs* to be talking about #NEC. As we’re less likely to receive proper communication from clinicians, we need easy access to info that can help us make informed decisions. To build a world without NEC for ALL of us, we need Black leaders & voices.
If you know of a Black family that’s expecting, that has a preemie/medically fragile baby, etc., please consider sharing this NEC Society resource with them: necsociety.org/nec-now/
@linseigh I know this experience extremely well. My daughter was born at 26 weeks and 4 days and she developed NEC at 6 weeks old and required most of her small bowel to be resected.
She is 7 years old with small bowel syndrome (SBS) but is managing it well and thriving. Happy to be a support person for any parent of a child that has gone down this tough road.
@amay206 I work with the NEC Society on featuring patient stories, so if your family is ever interested, here is the form we use: https://docs.google.com/forms/d/1jdr9zxCqp0bOTUjtFuZD43VyoyNWv2087Srr0DMaqEE/viewform?edit_requested=true
And here are some resources for survivors & their families, including a long term outcomes project I’ve been working on: https://necsociety.org/resources-for-long-term-nec-survivors-their-families/
The NEC Society is committed to building a world without necrotizing enterocolitis (NEC) by raising awareness, empowering families, and driving research. We are eager to feature families who have been touched by this devastating disease. By highlighting real families, we humanize the disease and help our community understand the urgency of this work. We invite families who have been affected by NEC to share their family's photos and stories with us. We will use these photos and stories on our social media pages, website, and materials to help raise awareness and advance the NEC Society's mission. If you are comfortable sharing your child's photo(s) and story with the NEC Society to feature publicly on our social media pages, website, and materials, please proceed by answering these questions. PLEASE NOTE: WE WILL NOT BE ABLE TO FEATURE ALL FAMILIES AND PHOTOS THAT ARE SUBMITTED TO THE NEC SOCIETY. WE WILL PRIORITIZE DIVERSE STORIES AND FAMILIES AND PHOTOS THAT ARE HIGH-QUALITY (NOT BLURRY, FOR EXAMPLE). If/when we post about your family's story, we will likely use our own words to paraphrase what you've shared with us here. We appreciate your kind understanding.
@linseigh It's funnny that you mention unicorns because she is obssessed with them.
NEC absolutely has long term effects, like you my daughter has some gross motor skill issues. I also think there is some evidence of dyslexia/dysgraphia but she has excellent support and is very eager to overcome any obstacle she encounters.
@linseigh I think it's so far outside of people's experience that its hard for them to understand.
Add the fact that NEC disproportionately affects Black people and that makes it even harder.
@amay206 exactly this. I always tell ask them in my speeches: why did you save my life only to forget about me?
At the very least, I would love to see more of the Black community talking about this and sharing resources! 99% of ppl hear about NEC when their child has been diagnosed w it, but we need to be informed beforehand, especially as Black parents are less likely to receive proper communication from medical staff due to perceived incompetence :/
@linseigh Its obvious that there needs to be a ton more of research and discovery. It seems like everyone's experience is so different.
Did you have to be on TPN (total parenteral nutrition)?
@amay206 Oh, there is a huge spectrum. When I attended my 1st conference, the world’s leading NEC experts were shocked I’d even graduated from university. They said I was “high functioning.” My dietitian (who recognized her handwriting in my NICU records🤯) muttered under her breath upon meeting me: “Seems competent.”
I know some who are on TPN, who have colostomy bags at 24, etc, but I only needed perinatal nutrition once in the hospital when I was 18.
Linseigh
Dori
Journey Sloane
Anthony 
📸