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Starting a Nonprofit as an SBS Patient: Alex Peebles 

Meet Alex Peebles: A SBS Patient Fighting for Representation

Most people remember the first months of 2020 as a time when their respective communities closed down due to the COVID-19 pandemic. But for Alex Peebles, the memory of April 2020 is significantly different. 

“I went into cardiac arrest twice. That stemmed from a blood clot in my stomach, which doctors found to be caused by my small intestine twisting over on itself, so, I had what’s known as a volvulus,” she said. “In addition to being placed on life support, the only solution to saving my life was to remove all of the unviable intestine that was inside of me.” 

After surgeons removed more than seventeen feet of 24-year-old Alex’s small intestine she received her Short Bowel Syndrome (SBS) diagnosis. 

“The diagnosis was wild and uncharted territory for me because I’d never had major health issues,” she said. “There was nothing for me to do but accept this diagnosis because the procedure ultimately saved my life. I’m incredibly grateful for that, but it was not without adjustment, confusion, and wondering what life was going to be like going forward.” 

Alex was placed on 24-hour Total Parenteral Nutrition (TPN), which would provide her with calories, vitamins and minerals that would be difficult to obtain due to the nature of her incident.

An Extraordinary Care Team

When asked about who she had in her life who rallied for her care and support, she recalls: “My immediate family was the best. From my dad traveling to bring me snacks when doctors allowed me to start eating solid foods, to my sister helping me shower so I could avoid disturbing my incision when I got home. My mom was helping me change my TPN bags and keep everything sterile, which was crucial to staying healthy and on an upward climb to normalcy. My family was one hundred percent Team Alex from the start.” 

Following her diagnosis, Alex struggled to find existing support groups that fit her needs. Now, she has made it her mission to provide various resources to people diagnosed with SBS and similar conditions, including a significant growth in the personal stories that are available for public consumption. 

“There’s information out there about short bowel syndrome – like statistical results and surveys – but there’s not much personal information. The experiences we individually have can be what someone else is looking for out there,” she said. “People need to know that they’re not alone and that SBS is not a death sentence.” 

She believes that representation of people with Short Bowel Syndrome is extremely limited in both public knowledge and in easily accessible healthcare services.

“We should have a space in the medical field. We should be able to walk into a clinic and be able to be treated, not shuffled off to an office miles away simply because no physicians close to home are versed on the disability,” she said. “I also feel that people shouldn’t have to give up so much financially that they have to choose to pay a TPN bill or pay rent, and potentially end up back in the hospital because they couldn’t get their nutrition.” 

A Catalyst for Change

Easing the financial burden of an illness like SBS is one of Alex’s primary goals with her nonprofit. 

“It’s very expensive to be on TPN,” she said. “There are so many scholarships, funds and resources for people with cancer, diabetes, heart disease, but not for conditions like SBS. There are people out there – including myself – who are suffering and looking for help and feeling like there’s no help out there. I want to offer that help and be a catalyst for change.” 

She’s working with her own care team and their professional networks to both gather necessary products and make plans for the future; her goal is to create and distribute care packages to ease the burden on patients so they can focus on recovery.

Now 26-years-old, Alex is writing a book and continuing to compete in pageants – like the Miss Missouri USA pageant last year, where she placed within the top 15 in the state.  

She states, “A big part of healing is waiting for your body to develop its new normal, which is not an overnight thing. Trust your care team, but you ultimately know your body better than anyone. We are our own experts. Even if it’s been cut open, if parts of it have died, you’re still here, and there is so much life for you to live.” 

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