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Social Media Summit Scholarship Essay – Crystal Saltrelli

Posted by @joycegroenke in Just Want to Talk, Aug 16, 2011

Editor's Note: This is an entry in our Scholarship Contest for Patients and Caregivers to attend the Mayo Clinic Social Media Summit Oct. 17-21 in Rochester, Minn. See this post

for more details on the contest, and please cast your votes by liking or commenting on the candidates you think would be best.

Here is Crystal Saltrelli’s Essay:

The first time I heard the word “gastroparesis” was the day I was diagnosed with the condition in 2004 at age 23. After I left the doctor’s office, I began searching for information to help me learn more about gastroparesis and figure out how to manage it. I went to the library and the book stores, but I couldn’t come up with a single book written about the topic. I turned to the Internet, but all I found were personal stories that painted a depressing, hopeless picture of the future. I felt overwhelmed, frustrated and alone.

I soon realized that if I was going to get well, or at least get better, my only option was to take responsibility for my own well-being, proactively explore all of my options, and become my own advocate. The next few years consisted of a great deal of trial and error and consequent ups and downs. At times I felt defeated and at other times I felt hopeful. But I always felt alone.

In 2009, having exhausted all other options, I decided to have a gastric neurostimulator implanted at the Mayo Clinic in Rochester, MN. This decision changed my life. Less than a month after the surgery, already feeling physically and mentally strengthened, I was able to start classes at the Institute for Integrative Nutrition (IIN). It was difficult to juggle the intensive schooling and the gastroparesis, but thanks to the combination of the gastric neurostimulator and what I was learning at IIN, my quality of life continued to improve.

Though I started the program at IIN to help myself, it didn’t take me long to decide that I had to use the information to help others, as well. By the time I graduated as a Certified Health Counselor, I was counseling a handful of other people with gastroparesis. I was finally living well with gastroparesis and I desperately wanted to educate, empower and inspire others to do the same. Above all, remembering how alone I felt early on in my journey, I wanted others to know that they were not alone.

With that in mind, I began blogging about my experience, though I wasn’t sure that anyone else would ever read what I was writing. Less than two years later, my blog has had nearly 27,000 visitors from all over the world. My counseling practice has also grown and now includes both individual and group programs for people with gastroparesis. In 2010, I began using Facebook and Twitter to better connect with other GPers (as I call them). This year I jumped into YouTube, making videos to better educate and inspire people.

Though I wouldn’t say that I’m grateful to have gastroparesis, I am grateful to have the opportunity to help others navigate this difficult condition and live as happily and healthfully as possible. I’ve received so many messages from people who say that my blog and Facebook page have uplifted their spirits, allowed them to take better care of themselves, helped them to better understand the condition, empowered them to become their own health advocates, and shown them that they are not alone.

Despite all of this, I know that there are still so many other people with gastroparesis out there, searching for guidance but not sure where to look. Attending the Mayo Clinic Social Media Summit would help me learn how to reach as many of those people as possible. Honing my social media skills will also help me to improve my advocacy efforts, increase awareness of gastroparesis, and start to bridge the gap between the medical community and the patient community. In addition, as a patient-advocate who has successfully built a strong community of followers, I’ll be able to share with other members of the Summit what I believe patients are looking for, especially when it comes to rare or poorly understood conditions.

Tags: Scholarship contest

tk731_2000, mary27davis, paarak and 69 others like this

Posted by @sheila1366, Aug 16, 2011

Crystal has been a great support for many with gastroparesis. I have learned more about my condition and how to manage it by watching her videos and reading her blogs. She is very inspirtional.


Posted by @wbundy, Aug 16, 2011


Posted by @websketch, Aug 17, 2011

I agree as well :0)


Posted by @crystalsaltrelli, Aug 17, 2011

Thanks, Sheila! So glad I've been able to help.


Posted by @jessstarlite, Aug 16, 2011

Crystal is an incredible resource for those suffering from a little understood, extremely challenging chronic condition. She is an inspiration to those of us suffering with gastroparesis, always there with good information meant to provide for not only our short-term survival but also our long-term good health.


Posted by @crystalsaltrelli, Aug 17, 2011

Thank you! When faced with an illness like gastroparesis where the immediate consequences are so life-altering, I think it's easy to forget that the choices we make now still affect our overall health the road.


Posted by @kayceej88, Aug 16, 2011

I've been struggling with trying to manage GP for a long time, but was only recently officially diagnosed. Even after speaking to doctors, nutritionists, and doing a ton of my own research, Crystal's websites have- without a doubt- been the best resource yet. She focuses on all aspects of GP- not only the physical struggles associated with it, but also the mental and emotional sides of it. She takes a very holistic approach, and everything I learn from her is so inspiring. Everything I've learned from her is really helping me learn to manage this disorder.


Posted by @crystalsaltrelli, Aug 17, 2011

So glad I could help you become your own advocate! I think what we as patient-advocates know better than anyone else is that chronic illness is not just a physical challenge. It truly affects all aspect of our lives.


Posted by @chopper, Aug 16, 2011

Crystal was such a great help to me. When I asked my gastroenterologist, "what does it mean to eat low fiber, low fat ? Can you help me?" I was given NO direction, nor any place to turn. I didn't understand what was going on with my stomach and I didn't realize that the foods and the way I was eating was making me sick. I'm grateful for the resource I found in Crystal and I hope anyone else who has gastroparesis can find her as well!


Posted by @crystalsaltrelli, Aug 17, 2011

I'm grateful for the opportunity to help! I think you bring up a good point. The initial confusion of "what do I do?!" can be so stressful and we often unknowingly do things that exacerbate the problem. Even a little information can make a big difference. What's that saying? When you know better, you do better!


Posted by @zivadiva, Aug 16, 2011

Since hearing last week from my GI at the Mayo Clinic who stated we think you may have gastroparesis, I immediately started researching and when I stumbled across Crystal Saltrelli’s facebook page and newsletter, I no longer felt hopeless. She provides honest, straightforward, and practical advice on how to cope with this life changing condition. She is truly an advocate for those with GP and an example that you can have a life again.


Posted by @crystalsaltrelli, Aug 17, 2011

So happy to help! Are you seeing docs at Mayo Rochester? That's where I had the bulk of my testing done (they're extremely thorough) and it's where my gastric neurostimulator was implanted.


Posted by @zivadiva, Aug 17, 2011

Mayo/Jacksonsville. They are within driving distance! I return next week for the GES but what I like is that I will see the doctor on that same day to know the results!


Posted by @crystalsaltrelli, Aug 18, 2011

Good luck to you! One of the things that has always impressed me most about Mayo is the efficiency -- no waiting around for test results!


Posted by @julieeriksson, Aug 16, 2011

My essay would start out very much like Crystals, never even heard of gastroparesis prior to my diagnosis. Luckily for me I had one huge advantage...I found Crystal & the wealth of info she has put out there for people dealing with this condition. My doctor was WODERFUL & diagnosed me within a 10 min discussion, but his counseling was very lacking "low fat, low fiber". I was on my own...then I found Crystals website & blog. Next doctors visit had HIM amazed at the fact I seemed to have info on all aspects of this disorder. Way more than "low fat, low fiber"...feeling much better now, Crystal is the one who has become my educator, my support, my mentor. She is the one who has made ME not feel alone. Don't know what I would have done without her source of information, suggestions & inspiration. (diagnosed 4 months ago)


Posted by @crystalsaltrelli, Aug 17, 2011

Thanks, Julie, and great point! Most docs are doing the best they can with the knowledge they have, but that knowledge is often limited when it comes to managing gastroparesis day-to-day. Part of what I hope to learn at the Summit is how to better spread awareness within the medical community about GP.


Posted by @dmr0759, Aug 18, 2011

yes Crystal has helped so many of us on G-Pact she is awesome


Posted by @christinaramos, Aug 17, 2011

When I first diagnosed with gastroparesis, I was given next to no information about how to manage the illness. I searched the internet and visited bookstores, but there is astonishingly little information on the condition, leaving patients in the dark, feeling frustrated and alone, not mention let down by the medical system. Then, I came across Crystal's website, and later her book! What a wealth of information! Crystal has been a wonderful resource, offering countless tips on how to manage symptoms, treatment options, plus suggestions about how to improve one's quality of life. Her information is always delivered in a professional and compassionate manner. I cannot thank Crystal enough for what she has done. I know that given the resources and tools, she will continue to spread awareness about gastroparesis and offer support to patients like myself.


Posted by @crystalsaltrelli, Aug 17, 2011

Thanks, Christina! You totally nailed the reason I want to attend the Summit -- the more tools and resources I have, the more effective I can be at offering support and raising awareness.


Posted by @thebrunz, Aug 17, 2011

Like Crystal, when I was first diagnosed, I went online and found a lot of really scary personal stories. Fortunately, my daughter found Crystal's site and I immediately became one of her clients. She has been an amazing resource and I believe she is an excellent candidate for the Social Media Summit,


Posted by @molleesullivan, Aug 17, 2011

Pick Crystal, Mayo Clinic!


Posted by @thansen1, Aug 17, 2011

Crystal has helped me tremendously!!


Posted by @heartfeathers, Aug 17, 2011

Chrystal deserves this!!!


Posted by @mrspucci, Aug 17, 2011

Crystal's web site has helped me to understand what gastroparesis. She has helped me to understand that there is more to life than just food. Positive thoughts will also help in not being afraid and letting gastroparesis take over your life.


Posted by @noopy1902, Aug 17, 2011

Crystal is a great person and she deserves this. She has helped me alot with my gastrparesis. I am so glad I found her. Way to go, Crystal!!


Posted by @serenity, Aug 17, 2011

Crystal really deserves this. She is a pioneer in helping others who have had similar experiences to hers. This is so valuable because there is such a lack of information available, but Crystal has used emails, surveys, newsletters, and social media to give suggestions to improve health and inspire hope for many people. Anything that will help her to continue her great work is greatly appreciated.


Posted by @tchris1225, Aug 17, 2011

Crystal has been so instrumental in helping me manage my life with gastroparesis. More than anything, her positive and upbeat attitude helps to encourage me to see the positive aspects of my life with this disease.

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