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joycegroenke

Social Media Summit Scholarship Essay – Kari Ulrich

Posted by @joycegroenke in Brain & Nervous System, 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.

Tags: Scholarship contest, aneurysm, preventive medicine, womens health, Brain Aneurysm

PAH1962, racervic, cjohnson and 50 others like this
eio

Posted by @eio, Aug 10, 2011

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".

crbotha and LanaCavassa like this
kariulrich

Posted by @kariulrich, Aug 10, 2011

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.

crbotha and upnati like this
eio

Posted by @eio, Aug 10, 2011

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

patunia

Posted by @patunia, Aug 12, 2011

Thanks Kari for your continued effort to provide support, and to be an advocate for those of us with the rare disease, Fibromuscular Dysplasia,FMD.The awarded of this scolarship would greatly expand education,research and advocacy for a rare disease. s

DoriP and crbotha like this
kariulrich

Posted by @kariulrich, Aug 13, 2011

Thank you Patunia!

nniekro

Posted by @nniekro, Aug 10, 2011

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

crbotha and upnati like this
kariulrich

Posted by @kariulrich, Aug 10, 2011

Thank you Natalie- you are truly an inspiration.

janiegs

Posted by @janiegs, Aug 10, 2011

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

crbotha

Posted by @crbotha, Aug 13, 2011

That is so correct, even in Port Elizabeth, South Africa!!!

upnati

Posted by @upnati, Aug 10, 2011

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

kariulrich

Posted by @kariulrich, Aug 10, 2011

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.

crbotha and upnati like this
upnati

Posted by @upnati, Aug 11, 2011

Yea, I think your right. You may need to change the name of MWVA lol .

kariulrich

Posted by @kariulrich, Aug 11, 2011

Funny- Jennifer, my co-founder and I have talked about that. Men are always welcome to our group :)! Have you had the opportunity to meet any other men with FMD?

crbotha and upnati like this
upnati

Posted by @upnati, Aug 11, 2011

Just givin ya a hard time. So far haven't met any men, but I have seen that there are a bunch of men with it .

kariulrich

Posted by @kariulrich, Aug 12, 2011

There are several on Facebook- I will have to connect you with them.

crbotha likes this
michaelulrich

Posted by @michaelulrich, Aug 10, 2011

Great job Kari!

Ben Leisen, crbotha, upnati and 1 others like this
upnati

Posted by @upnati, Aug 11, 2011

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!

kariulrich

Posted by @kariulrich, Aug 12, 2011

So cool to you two connect! 🙂 Love Social Media.

crbotha and upnati like this
sebley12

Posted by @sebley12, Aug 11, 2011

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.

crbotha and upnati like this
kariulrich

Posted by @kariulrich, Aug 11, 2011

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.

crbotha likes this
nursingpins

Posted by @nursingpins, Aug 11, 2011

Great job Kari! You and FMD deserve the scholarship.

kariulrich

Posted by @kariulrich, Aug 11, 2011

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.

crbotha likes this
jerome

Posted by @jerome, Aug 11, 2011

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!

kariulrich

Posted by @kariulrich, Aug 12, 2011

Jerome- I appreciate your kindness and friendship. I always have Dave in the back of my mind when I advocate. I miss him so much! He accomplished so much in his life time. His life has helped so many others with Friedreich's Ataxia. For those of you who are not familiar with FA- please take a moment to read about this rare disease: http://www.curefa.org/

crbotha likes this
bwbenz

Posted by @bwbenz, Aug 12, 2011

Great work Kari!

kariulrich

Posted by @kariulrich, Aug 12, 2011

Thank you so much, B.Benz.

lanacavassa

Posted by @lanacavassa, Aug 12, 2011

Kari, Thank you so much for educating me on this "rare" disease. Your passion for helping others is amazing. And one of the greatest tools for teaching and bring awareness to issues is social media. I know anytime I have had any illness or injury, the first thing I try is to connect with someone that has already been through it. I appreciate your being there for others when they find out they too are being affected by this disease. I really hope you get the scholarship to this media summit. I think it will help you to be even more effective with your organization. Keeping my fingers crossed for you!! Keep on Fighting! Fondly, Lana

kariulrich

Posted by @kariulrich, Aug 12, 2011

Lana- you are an amazing person and I am so glad I have had the opportunity to meet you through this site. I really enjoy chatting with you. Thank you for your support and encouragement. Hugs!

crbotha likes this
petedocter

Posted by @petedocter, Aug 12, 2011

Well written essay! Good to hear your thoughts on what sounds like a misunderstood and potentially isolating subject.

kariulrich

Posted by @kariulrich, Aug 12, 2011

Pete- I am humbled by your comments- Thank you for your support and all that you have done to keep us smiling through the years with your extraordinary talent.

crbotha likes this
benzbabe1

Posted by @benzbabe1, Aug 12, 2011

Kari.. Your essay is very powerful.. You deserve to be at this Summit because you will not only educate yourself but you will share what you learn .. Turning to the social networking sites is our future and we need qualified people to lead and control that future. After reading this I would trust that you will educate and lead with much passion ! Best of luck !!

crbotha and eio like this
kariulrich

Posted by @kariulrich, Aug 12, 2011

I agree that many patients have turned to social network sites for both support and education. Qualified experts in all ares are needed, but especially in the health care sector. I am so happy to see Mayo leading the way in this area, and hope more physicians can find their personal comfort zone when working with social media. Patients will continue to rely on the internet as a source of information. Patient need to be able to recognize what a reliable source is.

crbotha and eio like this
vintagegirl

Posted by @vintagegirl, Aug 12, 2011

Kari, the energy you continue to put toward education and support regarding FMD is inspiring! You deserve the opportunity to attend this summit. I know you will use everything you learn to improve awareness regarding FMD and enrich the lives of all the people you've already reached.

kariulrich

Posted by @kariulrich, Aug 12, 2011

Thank you vintagegirl for your support- there is always so much to learn. I appreciate you taking the time to read my essay and commenting.

crbotha likes this
ctharp

Posted by @ctharp, Aug 12, 2011

Thanks for such an informative message!

kariulrich

Posted by @kariulrich, Aug 12, 2011

You are welcome! Thank you for taking the time to read my essay.

crbotha likes this
lisafields

Posted by @lisafields, Aug 12, 2011

While I’m certain there are many patients/caregivers who are worthy and have earned the opportunity to gain the scholarship Mayo Clinic is offering I can't think of anyone as worthy as Kari Ulrich.

I first became aware of Kari as we both entered into the selection process of becoming a Mayo Clinic Social Media External Board Member. While it could have been easy to become focused only on her efforts to achieve this goal she went out of her way to reach out and help others. Having the ability and knowing the valuable of collaboration would serve her well if chosen for this unique opportunity.

Her achievements are numerous, her leadership genuine and her creative spirit valuable. Kari has also taken the time and patience necessary to learn a great deal about Social Media. I'm certain the formal and informal information she would gain from the Mayo Clinic would be help her reach an even larger pool of patients and caregivers.

Please accept my sincere vote of confidence for Kari Ulrich.

kariulrich

Posted by @kariulrich, Aug 12, 2011

Lisa Fields- my dear social media mentor! You have taught me so much. I think one of the most important things I have learned from you is how human social media is. How one can make such deep friendships in a 140 characters is only understood by a true twitter friend. You are making such a difference in the health care community- and although I may not say a lot at times- know I am listening and learning so much from you. Lots of love- Kari

crbotha likes this

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