Social Media Summit Scholarship Essay – Kari Ulrich

Posted by Groenke @joycegroenke, Aug 10, 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:
http://socialmedia.mayoclinic.org/2011/07/26/patient-caregiver-scholarship-contest-for-social-media-summit/ 

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 Kari Ulrich’s Essay:

In April 2007 I was diagnosed with brain aneurysms and a rare vascular disease called Fibromuscular Dysplasia (FMD). What started as exercise intolerance and a swishing in my ear turned into something much more serious. I had symptoms for many years, but nobody had really put it together until I had a thorough coordinated evaluation at Mayo Clinic. Through this journey I learned that vascular disease in women is under diagnosed. I also learned that there is not much patient support or advocacy.

Being told that you have rare disease is devastating. Instinct or “fight or flight” took over and I decided to fight. Like many empowered patients I went to the web and found both reliable and not-so-reliable sources. I also noticed that patients like myself expressed two main concerns when it came to their health care. First, their doctors did not take their symptoms seriously. Second is that many are frequently given misinformation regarding their disease.

I wanted to find a way to support those afflicted with FMD and other non- inflammatory vascular diseases. In 2010 I co-founded a support group called Midwest Women’s Vascular Advocates. Our mission is to support and educate women with non-inflammatory vascular disease. We have a web page and a Facebook site as a way to connect with others. Locally we hold support group meetings twice a year and have drawn patients from out of state.

My experience using social media has included Twitter, Facebook, Linked In, YouTube, and blogs amongst other online community support. I use Twitter (@FMDGirl) to help educate the public about vascular disease. This has been a great media to interact with other health care professionals and patients. I have held one twitter chat #FMDChat that I hope to see grow over the next few years. Through social media contacts, I was also interviewed for over an hour on a medical internet radio station with call in guests. With new information coming out through research and increased awareness social media is going to play an important role in getting accurate information out to the public.

With the use of social media I have found many others like me all over world. I was fortunate to meet a young girl from South Africa with a rare form of FMD through Facebook. Facebook became an important tool in getting her the proper medical care that she needed. Through this contact I was able to facilitate consultation and treatment at a US medical facility and help fundraise on her behalf.

Rare disease needs more attention, and being able to participate in Mayo Clinic’s Social Media Summit will give me the opportunity to explore more diverse communication tools. Participation will help me facilitate change locally and globally. I hope to learn how to become a better blogger and how use video technology as a medium of communication. The world of health care in social media is exploding in many directions and it is my hope that the summit will give me a clearer picture of what social media can do to help me reach my goals.

Knowledge can empower patients and caregivers. There is more work to be done, the health care community has come a long way since my diagnosis but it is not enough. Being proactive through social media is the answer to making rare diseases not so rare. I would like to contribute to the conference through my experiences both as a patient and an advocate. I can give insight to the thoughts and fears patients face when dealing with a rare disease. I can bring attention to what is needed in social media health care.

My goal is to see the medical community embrace social media as a way to make important changes in health care and the way we look at rare disease. We can learn a lot from each other by making a connection. Social Media allows patients to become real, with real concerns and fears. We are a new voice that demands information and we want be active team members in our care. I would be honored to be one of the many voices that change the way the world participates in health care.

Good job expressing how important social media is in bring awareness to “rare diseases” and encouragement to myself as a person who has been diagnosed with 2 diseases that are “rare”.

Liked by LanaCavassa, crbotha

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@eio

Good job expressing how important social media is in bring awareness to “rare diseases” and encouragement to myself as a person who has been diagnosed with 2 diseases that are “rare”.

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Thank you eio for your kind comment! There are so many voices that need to be heard. I think the most important aspect of communication is LISTENING. Social media is not just about writing,videos, tweeting our messages but sitting back and listening to what is being said by others.

Liked by upnati, crbotha

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Kari, your story is amazing and you are such a fighter. The Joe Niekro Foundation supports your efforts and commitments to the neurosciences.

Liked by upnati, crbotha

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@eio

Good job expressing how important social media is in bring awareness to “rare diseases” and encouragement to myself as a person who has been diagnosed with 2 diseases that are “rare”.

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Yes and from listening one is able to learn from anothers experience and grow to have a deeper understanding.

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@nniekro

Kari, your story is amazing and you are such a fighter. The Joe Niekro Foundation supports your efforts and commitments to the neurosciences.

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Thank you Natalie- you are truly an inspiration.

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Kari, you are making such a difference for FMD survivors all over the world! Thank you!

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Kari,WAY TO GO GO GO!! Awareness& research is much needed,Kari you are a great one with experience with social awareness & research

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Great job Kari!

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@upnati

Kari,WAY TO GO GO GO!! Awareness& research is much needed,Kari you are a great one with experience with social awareness & research

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Together we are making a difference. Social Media is making a huge impact with rare disease. There was a poster presented from a Mayo physician at a cardiovascular conference I attended this year- and the research was done through social media. The topic was coronary artery dissection- I was in awe what can be done through social media. The poster brought so much attention to a rare disorder. Can you imagine where we will be in the next 5-10 years with more empowered patients like you speaking up- I bet we will find that FMD in men is much more common than we think. Your encouragement is appreciated.

Liked by upnati, crbotha

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I hope you are granted this scholarship. You are an inspiration and a voice to all of us and such a pretty lady as well. I believe God has a plan for all of us out there, and this is possitively in his plan for this Social Media Essay contest to happen. Best wishes to you.

Liked by upnati, crbotha

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@sebley12

I hope you are granted this scholarship. You are an inspiration and a voice to all of us and such a pretty lady as well. I believe God has a plan for all of us out there, and this is possitively in his plan for this Social Media Essay contest to happen. Best wishes to you.

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I look forward to learning more about autoimmune disorders from you. They have impacted several important people in my life.Thank you for your kind words.

Liked by crbotha

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Great job Kari! You and FMD deserve the scholarship.

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@nursingpins

Great job Kari! You and FMD deserve the scholarship.

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Thank you my twitter friend for taking the time to read my essay. I have learned so much from you over the past year. Your dedication to nursing social media and education is commendable.I appreciate all you have done to help raise awareness of FMD.

Liked by crbotha

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Great essay, Kari! Your passionate commitment to advocacy for FMD research and education never ceases to amaze me. Best of luck in the scholarship contest!

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@michaelulrich

Great job Kari!

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Micheal, I’m from Va and I have been corisponding with Kari since spring on face book. Just want to thank you along with Kari for what the two of you are doing!

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