A bittersweet Life living with NEC long-term effects.

The story of Lakevia

My name is Lakevia. I’m a Survivor of a devastating Intestinal disease called Necrotizing Entercolitis (NEC). I was diagnosed at Birth; had 2 extensive surgeries at 2days old & at 5 months to reconnect my bowels. Due to the unknown cause of NEC, LONG-TERM complications are hard to diagnose. The Long-term complications of NEC are Nutritional & Neurological delayments/ deficiencies. I endure/suffers from BOTH from personal experience. Due to losing 90% of my large intestines, I’m prone to dehydration & I endure vitamin Deficiencies which causes Neurological symptoms which is LIFE-LONG & a struggle to live with. I’m sharing a bit of MY STORY so others like myself will feel seen, heard, valued & 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 a few years ago around 2016 when I found The NECsociety.org….
They’ve helped me in some ways & in 2019, I attended my FIRST NEC conference. I gained more knowledge and in return, they also gained knowledge about Survivors & NEC long term effects. After attending the conference in 2019, I wanted to help in more ways by being an advocate for myself & others who suffers from the long-term complications of NEC. I started researching more & more about the illnesses that I endure due to losing 90% of my large intestines! Having TWO EXTENSIVE surgeries as an infant caused ALL of my ABDOMINAL ORGANS to become stuck together to the abdominal wall (the peritoneal). I have no normal tissue within the abdomen/pelvic area. I have Reproductive issues (constant fluid & cysts) on my pelvic organs. I have anxiety from all the pain & frustration from feeling INVISIBLE due to NEC long-term effects that are NOT visible. I also have spinal illnesses (arthritis in the spine, degenerative disc disease) fibromyalgia, Chronic dry eye disease, GI issues etc. I’m living a BITTERSWEET Life.

Majority of Medical Personnel/ Professionals don’t have knowledge of NEC long-term effects, I have A LIST of all my Health struggles/Illnesses wrote down for medical personnel/professionals to have that NEC has caused, with NEC being NUMBER ONE at the top of the list. I was inspired to write that list by one of my favorite characters on Grey’s Anatomy who portrays Dr. Bailey. Having that list of every illness I endure, makes it easy to maintain that Physician & patient ability to understand one another & lesson the confusion of not knowing from my Perspective/PERSONAL EXPERIENCE.
I’m NOT able to OBTAIN A JOB which is frustrating, overwhelming, heartbreaking majority of the time. With GOD’S HELP, GRACE, GUIDANCE, SUPPORT etc, I keep going & I never give up! I want more out of Life, so I’m turning my pain into PURPOSE & my struggles into STRENGTHS to advocate for myself & other NEC survivors who suffers from long-term complications of NEC. I do what I can & let GOD handle the rest! I hope to get the proper help/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 any illnesses/disease. I will NEVER GIVE UP on my dreams no matter how impossible they seem because with GOD, ALL THINGS ARE POSSIBLE! This is the BITTERSWEET LIFE OF BEING A NEC SURVIVOR WITH LONG-TERM EFFECTS in my OWN PERSONAL EXPERIENCE!