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Social Media Summit Scholarship Essay – Sarah E. Kucharski

Posted by @joycegroenke in Brain & Nervous System, Aug 8, 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 Sarah Kucharski’s Essay:

Upon experiencing a gastric rupture on April 24, I was jolted out of the comfortable lull into which my family and myself had settled in terms of my health. Things had been quiet, perhaps too much so, and it is patently easy for one to forget the seriousness of one's medical condition when not actively in crisis. There are, however, daily reminders of my medical past. I have a tremendous bypass scar across my mid-section that traces my ribcage, an adjacent scar from my kidney removal, and four tiny scars from my laproscopic gallbladder removal. I lost the sensations of pain and temperature on my right side after a stroke in 2008, which also left me with nystagmus in my left eye. There’s the new 11-inch scar that splits my abdomen, which still itches and pulls each time I stand up. These statements are characterizations of my body, which increasingly seems to have a life of its own independent of my soul. My body does what it wants to, regardless of my intentions for it. It and I have spoken repeatedly about the matter, and while I believe its heart is in the right place (the doctors at least have never given me any reasons to doubt that), it just never can seem to get—and keep—its act together.

Despite this rather extensive medical history and care from highly qualified doctors, I have remained undiagnosed for 31 years. The best we could get was "something like fibromuscular dysplasia." Fibromuscular dysplasia is rare, and it took a trip to the Cleveland Clinic to finally learn that I have a rare version of this rare disease. It is a vascular disease that most commonly affects the renal arteries, and in its primary form a string of beads appearance characterizes the artery. The result is a reduction in blood flow that, depending on severity, can result in organ failure. There is no cure and no specific treatment only management of symptoms, which include high blood pressure, kidney failure, ringing and/or swooshing in the ears, vertigo, headache, transient ischemic attack, stroke, Horner's syndrome, neck pain, and artery dissection.

FMD in and of itself will not lead to death, though strokes, artery dissection, and organ failure very well can. The median age for FMD patients was last reported at 50. A median is not an average. It is a middle number, and well, it's the middle number between 0 and 100. I could live to be annoyingly old—or not. Such diseases often prompt a lot of dwelling on the "or not" part of living. The simple fact of that matter, which is also something we tend to forget, is that any one of us has the opportunity to become "or not" at every moment of every day. We could slip in the shower. We could be in a car accident. We could choke on a pretzel. We are very fragile creatures overall. I have long had a pragmatic view of my condition and have tried my best to continue on with my adventures passionately and fearlessly.

I have been blogging as The Afternoon Nap Society since January 2010 and recently created Facebook and Twitter accounts for TANS, which serves as repository for my “ruminations from the prone position.” I blog to have an outlet for the thoughts and emotions that arise from being a chronic patient. My hope is that by sharing my story I will empower other patients to be proactive about and engaged in their healthcare and to teach patients effective ways of managing relationships with their doctors and cargivers. My goal is to accomplish this by incorporating my own experiences, stories from other patients, and interviews with doctors about what characterizes a good patient into a book. I have committed to officially begin the process in January 2012, after I have finished my master’s degree. Participating in the Social Media Summit, Social Media Health Network member meeting and Social Media Residency would allow me to learn how to best use and promote my TANS blog, Facebook and Twitter accounts to connect with interview subjects and to accomplish another item on my bucket list—raise awareness of Fibromuscular Dysplasia.

Tags: Scholarship contest, kidney conditions, patient care

Ingaborg, amorris, revcrimson and 102 others like this

Posted by @travisbumgardner, Aug 8, 2011

I think a guidebook on how to be a better patient would be a great idea!

SLKucharski likes this

Posted by @afternoonnapper1, Aug 8, 2011

If there's any way my first name could be spelled with the h on the end of it on this posting, that would be awesome!

FMDAdvocate likes this

Posted by @sarahsmom, Aug 9, 2011

Gives parents a place to share feelings of guilt, doubts, fears, and day-to-day joys

AfternoonNapper likes this

Posted by @fmdadvocate, Aug 9, 2011

Thank you for sharing your story about the mystery diagnosis, FMD, Fibromuscular Dysplasia. My FMD diagnosis was made at the Mayo Clinic in Florida thanks to Dr Kevin Barrett and Dr David Miller. More information about this disease can be found on the non-profit web site

Kari Ulrich likes this

Posted by @afternoonnapper1, Aug 13, 2011

The website has been wonderful and is what pointed me toward Dr. Heather Gornik at the Cleveland Clinic.


Posted by @katepasa, Aug 10, 2011

A road map to receiving the best health care! Wonderful. Since health and illness are relative to a person's perception and experience, it would be incredibly helpful to give patients the tools they need to communicate with their providers. If treatment is not suitable to a patient, it's not suitable.

AfternoonNapper likes this

Posted by @glennayoung, Aug 10, 2011

Sarah, when you are ready to write I have a patient story to tell you.

AfternoonNapper likes this

Posted by @afternoonnapper1, Aug 11, 2011

I am more than ready to listen!


Posted by @kariulrich, Aug 10, 2011

Sarah- Thank you for sharing your experience. It is so good to meet another FMD patient who is interested in social media. I hope some day we can meet. Congrats on your Masters Degree- no easy task when dealing with FMD! I am going to quote a friend of mine, "FMD = Fine, Mighty and Dynamic". Your essay is the definition of Fine, Mighty and Dynamic! Warmest Regards, Kari

AfternoonNapper likes this

Posted by @becky1, Aug 10, 2011

Patients do need help learning how to take an active role in their health care. Especially those dealing with chronic conditions. Health care is not a one way street, originating from the doctor and flowing to the patient. When patients take an active role in their health care, the system works better. However, it is not intuitive and most patients don't know what their role is or how to move beyond a passive role as "patient" to "participant." Coaching on this subject through social media would be AWESOME! You must have learned a lot about determination in order to keep fighting to finally get a diagnosis and not give up and such live with a mystery disease.


Posted by @f0xfire13, Aug 10, 2011

It is very difficult for patients to navigate the healthcare maze. So much of the time doctors do not communicate well with one another and it is important for patients to help bridge the gap. Any shared experiences that can help all of us to be more proactive patients would be extremely valuable.
Thanks for being so willing to share so much and help guide patients though the maze.


Posted by @pdmace2, Aug 10, 2011

Sarah, Thank you for sharing your story and raising awareness of FMD, good luck!

AfternoonNapper likes this

Posted by @meerkat36, Aug 10, 2011

thanks for sharing, sarah, best wishes. -nick breedlove

AfternoonNapper likes this

Posted by @christinm, Aug 11, 2011

Thank you Sarah, and good luck with the contest!

AfternoonNapper likes this

Posted by @thatbeat, Aug 11, 2011

Sarah shares a very compelling story that must certainly be felt by those who have experienced similar symptoms. Its clear that she is determined to make a difference in her life and others, I hope that she is selected for the scholarship as so many will benefit from her attendance at the Mayo Clinic summit. Good luck Sarah.

AfternoonNapper likes this

Posted by @ivannasmith, Aug 11, 2011

Thank you for sharing your story, Sarah. I agree that we all need to learn how to become better patients--through proactive measures in serving as our own advocates.

AfternoonNapper likes this

Posted by @scottyc, Aug 11, 2011

Every day is a gift to us all, as nothing is promised. An attitude of gratitude can be tough at times, but helps everyone in every situation. Thanks for sharing Sarah, best of wishes & good luck on the contest!

AfternoonNapper likes this

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