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Necrotising enterocolitis (NEC) and its long-term complications: Lakevia Ward’s experiences

Lakevia Ward shares her “bittersweet life” living with the long-term effects of necrotising enterocolitis (NEC), a serious illness in which tissues in the intestine (gut) become inflamed and start to die


My name is Lakevia Ward. I’m a survivor of a devastating intestinal disease called necrotising enterocolitis (NEC). I was diagnosed at birth, had two extensive surgeries at two days old and at five months to reconnect my bowels. Due to the unknown cause of NEC, its long-term complications are hard to diagnose.


A selfie of Lakevia Ward

The long-term complications of NEC are nutritional and neurological delays and deficiencies. I have endured suffered both in my personal experience. Due to losing 90% of my large intestines, I’m prone to dehydration and I endure vitamin deficiencies which cause neurological symptoms which are lifelong and a struggle to live with.

I’m sharing a bit of my story so others like myself will feel seen, heard, valued and not alone!

As a survivor of NEC, I didn’t notice any long-term symptoms until my adolescent years. That’s when I started to research more about NEC. I didn’t know anything about it until around 2016 when I found the NEC Society.


They’ve helped me in some ways and in 2019 I attended my first NEC conference. I gained more knowledge and, in return, they also gained knowledge about survivors and NEC’s long-term effects. After attending the conference, I wanted to help in more ways by being an advocate for myself and others who suffer from the long-term complications of NEC. I started researching more and more about the illnesses that I endure due to losing 90% of my large intestines!



Lakevia speaking at a NEC conference.


Me and NEC—the long-term effects

Having had two extensive surgeries as an infant caused all of my abdominal organs to become stuck together to the abdominal wall. I have no normal tissue within the abdomen and pelvic area. I have reproductive issues (constant fluid and cysts) on my pelvic organs. I have anxiety from all the pain and frustration from feeling invisible due to NEC’s invisible long-term effects. I also have spinal illnesses (arthritis in the spine, degenerative disc disease), fibromyalgia, chronic dry eye disease, gastrointestinal (GI) issues, and others.


Because the majority of healthcare professionals don’t have knowledge of NEC’s long-term effects, I have written a list of all my health struggles—with NEC at the top. I was inspired to write that list by one of my favourite characters on Grey’s Anatomy who portrays Dr Bailey. Having that list of every illness I endure makes it easy for the physician and patient to understand one another and lessens the confusion of not knowing my perspective and personal experience.


“I’m living a bittersweet life.”

I’m not able to obtain a job which is frustrating, overwhelming and heartbreaking the majority of the time. With God’s help, grace, guidance and support, I keep going and I never give up!


I want more out of life, so I’m turning my pain into purpose and my struggles into strengths to advocate for myself and other NEC survivors who suffer from long-term complications of NEC. I do what I can and let God handle the rest! I hope to get the proper help and support that I need medically. Through all that I endure, I want to return to school to study nursing to help those just like me suffering from long-term effects of illness or disease.


I will never give up on my dreams no matter how impossible they seem, because with God all things are possible!

 

Would you be interested in writing about your experiences with rare disease? Email hello@rareyouthrevolutionmagazine.com for more information.

 

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