What I do: I am a 28 year old Area Sales Manager in New York City for a healthcare company that uses 3D printing technology to improve orthodontics. I work directly with orthodontists and residency programs in the NYC area to help them integrate the new technology.
Favorite things: Yoga, running, beaches, music concerts, traveling, self-improvement, time with my family and friends.
Growing up with Hirschsprung’s:
When I was about a year old, my parents noticed I was having trouble eliminating, and the condition appeared to worsen as the weeks went on. After seeing a pediatric GI specialist and trying a series of medications that proved ineffective, a biopsy of my colon revealed that I had HD. I was 18 months old when I had the surgery that removed about eight inches of my colon. To this day, my parents still talk about how my surgeon reassured them that I was “a perfectly healthy child with a slight plumbing problem.”
After my surgery, life became fairly normal (aside from having to wear diapers and pull-ups for a couple of years later than my peers – it took that long for my system to fully recover). However, throughout the years, I have definitely self-identified as the friend and family member with “stomach issues.” I first realized I was different when my family and I took a trip to Hawaii. I was about 7 years old and, after sitting on a flight for 10+ hours, my digestive system was completely messed up, unlike the other members of my family. I was constipated for days following the flight, and it took a discussion with my pediatrician to realize that I can’t sit for long periods of time. I need to get up at some point and do some yoga poses to “keep things moving.”
That experience was the first of many instances where I found myself in a place where things had stopped moving, and I needed to come to terms with the fact that my digestive track is more sensitive than normal. To counteract this, I’ve tried many diets including going dairy free, gluten free, the low FODMAP diet, and a high fiber diet to promote regularity. I have also been diagnosed with small intestinal bacterial overgrowth (SIBO) a couple of times and have taken the necessary antibiotics to alleviate the symptoms of bloating, diarrhea, and constipation.
HD can be tricky because some days are great, and others aren’t so much. I’m now 27 years old and to this day, I’m still trying to figure out the best way to cope with some of these sensitivities and irregularities. Although my HD symptoms are not as severe as some of my peers, a chronic ailment of any sort can definitely take a toll on one’s mental and emotional health and should not be discounted. That’s where REACH comes into play:
Prior to collaborating with REACH, I felt pretty isolated because I didn’t have a network of HD peers that I could connect with and share experiences. This community is doing great things to bring HD out into the open, explain how it can impact someone’s daily life, and share solutions. HD isn’t unmanageable, but it can be a struggle if you don’t have a support system in place to alleviate some of the burden.
Contact me! If you’d like to ask me any questions at all or simply chat about your experience with HD, don’t hesitate to reach out - hirschsprungstories@gmail.com!