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.

KARI ULRICH SAVED MY DAUGHTERS LIFE!, I am the mother of the young girl from South Africa, which KARI mentions in her essay.

KARI ULRICH has to win a Scholarship for Patients and Caregivers to attend the Mayo Clinic Social Media Summit Oct. 17-21.

KARI ULRICH is still our biggest help and advisor, for us living in a country where barely anyone has even heard about FMD and there is absolutely no treatment for my daughters Intimal Fibromuscular Dysplasia.
Without KARI ULRICH we would still be in the desperate situation we were, before KARI ULRICH came to our aid,
My daughter, Ashleigh Botha, from Port Elizabeth, South Africa, became ill at 11, after 4 years of constant tests, a Neurologist suggested she be tested for Fibromuscular Dysplasia. This was confirmed, after her 7th renal artery angioplasty, and a self medicating stent had been inserted into her renal artery. We were told by doctors they could not cure it or prevent it from spreading through her arteries, and there was no treatment available, as it was a rare disease and South African doctors had never before seen it and knew nothing about the disease. We were told there was nothing more that could be done for Ashleigh.
My son immediately started “ASHLEIGH BOTHA SUPPORT AND PRAYER GROUP” on Facebook. Within hours we were contacted by KARI ULRICH, an FMD sufferer from USA, who was also a trauma sister, and on the FMD Board. This is proof how KARI used social media constantly as it was only a few hours, before we heard from her. Since that moment, KARI became Ashleigh’s life line and still is today.
There was no information on FMD in SA, and KARI explained everything about the disease to us, answered all our questions, and immediately started contacting doctors in USA who treated FMD, to find the best help for Ashleigh. KARI and I kept in contact via Facebook as well as email. KARI ULRICH made contact with Ashleigh, herself, Colin, Ashleigh’s dad, and Ashleigh’s brother and sister, Chelsea and Darren. KARI also contacted everyone close to Ashleigh, and became the most important person in our lives, and the only bit of hope we had ever been given. KARI ULRICH put us in contact with the FMD Unit at Cleveland Clinic, Ohio, and helped make all the arrangements for Ashleigh and I to get appointments with the correct doctors.
Our South African medical aid refused to assist us, as FMD is not on their data base of rare diseases, and she could not be cured. While we started fund raising here in S.A, KARI ULRICH began fundraising in America, and created a website for Ashleigh, http://www.helphealashleigh.com, as well as a HELP HEAL ASHLEIGH online shop at Cafe Press..
Sadly Kari was asked to resign from the FMD Board as she was helping our family too much!!, and this was a conflicting interest! KARI ULRICH was an extremely important person on the FMD Board, and she was a great loss to them, as she had been doing the most excellent work for the Board.
With KARI’S help, all through SM, we were able to take Ashleigh to the Cleveland Clinic in June 2009. It was discovered that Ashleigh had a rare form of Intimal FMD, which is far more progressive and aggressive than FMD, and had to have a renal artery aorta bypass immediately as the stent had been crushed by her artery within 3 months of being inserted. Cleveland Clinic doctors referred to Ashleigh as a most unusual and complicated case. KARI travelled across America twice to be with Ashleigh, and support her, during her intensive testing and surgery. After Ashleigh was discharged, we had to remain in USA for a further 4 weeks, before Ashleigh was allowed the long flight home to South Africa. KARI ULRICH immediately took us into her wonderful, loving home and family, and cared for Ashleigh and myself, both physically, emotionally and financially. With KARI’S nursing experience, she picked up a thrombosis in Ashleigh’s leg where the vein had been removed for the bypass, and with her husband, DR MICHAEL ULRICH’s assistance arranged the necessary treatment and corresponded with Ashleigh’s doctors at Cleveland Clinic about Ashleigh’s treatment.
KARI, Ashleigh and our family have kept in contact via SM, since then, and KARI ULRICH has advised and helped with every problem Ashleigh has encountered. Ashleigh needs to return to Cleveland Clinic very urgently to have her mesenteric artery bypassed and repairs to her aorta where her mesenteric and celiac arteries have the same origin and come off the aorta too low down. She is also needing her previous renal artery bypass attended to as this dilated to 4 times its original size within 10 months. KARI ULRICH is already making plans for warm clothing for us, as we will be there in December, planing to be with Ashleigh in Cleveland, and also for us to be with her family for Christmas, if we are still in USA
Our Medical Aid will still not assist us and with the help of KARI and SM, we are fundraising madly to get the finances to pay for Ashleigh’s surgery. Through SM we have managed to meet incredible people who have opened their hearts to Ashleigh, and I am using the info from SM to try and motivate our medical aid to assist with Ashleigh’s health care, as she will have to return to Cleveland Clinic regularly to have diseased arteries bypassed, and there are no doctors or facilities In South Africa for this to be done.
COLLEEN BOTHA, Port Elizabeth, South Africa

Matthew Katz, MD says:
July 23, 2011 at 11:15 pm
Dear Colleen:
Social media has clearly been a great support to you and Ashleigh, for whom it has already had lifesaving benefits.
I know KARI ULRICH from online communication and she’s wonderful, clearly an excellent advocate for your daughter. There has to be ways we can learn to use social media to help people like your daughter, and I find it both perplexing and frustrating.

Thank you for your kind reply Matthew. Thank you for your concern, and with the help of SM, I will continue my fight to give Ashleigh the best life possible. Thank you.

*
Matthew Katz, MD says:
July 24, 2011 at 9:49 pm

As a parent, I fully understand your desire to find any way to bring your daughter back to her doctors for help. I wish both you and Ashleigh the easiest, swiftest path to get the care she needs.

PLEASE GIVE KARI THIS SCHOLARSHIP TO ENABLE HER TO CONTINUE HELPING OTHERS, SUCH AS OUR FAMILY, WHO ARE IN DESPERATE SIUTUATIONS. WE WILL NEVER BE ABLE TO THANK KARI AND HER FAMILY SUFFICIENTLY FOR WHAT SHE HAS DONE AND IS STILL DOING TO HELP HEAL OUR ASHLEIGH. I KNOW FROM EXPERIENCE THAT THERE IS NO OTHER PERSON MORE WORTHY OF THIS AWARD THAN KARI ULRICH!!!!

REPLY
@janiegs

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

Jump to this post

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

REPLY
@lisafields

I’m really only one person. Could some helpful person delete one of them.
Thanks,
Lisa

Jump to this post

Oh, Thanks!
See you are such a creative rascal. We need you on the team and to assist all the others who will make a difference.

REPLY
@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”.

Jump to this post

Thank you Patunia!

REPLY
@crbotha

KARI ULRICH SAVED MY DAUGHTERS LIFE!, I am the mother of the young girl from South Africa, which KARI mentions in her essay.

KARI ULRICH has to win a Scholarship for Patients and Caregivers to attend the Mayo Clinic Social Media Summit Oct. 17-21.

KARI ULRICH is still our biggest help and advisor, for us living in a country where barely anyone has even heard about FMD and there is absolutely no treatment for my daughters Intimal Fibromuscular Dysplasia.
Without KARI ULRICH we would still be in the desperate situation we were, before KARI ULRICH came to our aid,
My daughter, Ashleigh Botha, from Port Elizabeth, South Africa, became ill at 11, after 4 years of constant tests, a Neurologist suggested she be tested for Fibromuscular Dysplasia. This was confirmed, after her 7th renal artery angioplasty, and a self medicating stent had been inserted into her renal artery. We were told by doctors they could not cure it or prevent it from spreading through her arteries, and there was no treatment available, as it was a rare disease and South African doctors had never before seen it and knew nothing about the disease. We were told there was nothing more that could be done for Ashleigh.
My son immediately started “ASHLEIGH BOTHA SUPPORT AND PRAYER GROUP” on Facebook. Within hours we were contacted by KARI ULRICH, an FMD sufferer from USA, who was also a trauma sister, and on the FMD Board. This is proof how KARI used social media constantly as it was only a few hours, before we heard from her. Since that moment, KARI became Ashleigh’s life line and still is today.
There was no information on FMD in SA, and KARI explained everything about the disease to us, answered all our questions, and immediately started contacting doctors in USA who treated FMD, to find the best help for Ashleigh. KARI and I kept in contact via Facebook as well as email. KARI ULRICH made contact with Ashleigh, herself, Colin, Ashleigh’s dad, and Ashleigh’s brother and sister, Chelsea and Darren. KARI also contacted everyone close to Ashleigh, and became the most important person in our lives, and the only bit of hope we had ever been given. KARI ULRICH put us in contact with the FMD Unit at Cleveland Clinic, Ohio, and helped make all the arrangements for Ashleigh and I to get appointments with the correct doctors.
Our South African medical aid refused to assist us, as FMD is not on their data base of rare diseases, and she could not be cured. While we started fund raising here in S.A, KARI ULRICH began fundraising in America, and created a website for Ashleigh, http://www.helphealashleigh.com, as well as a HELP HEAL ASHLEIGH online shop at Cafe Press..
Sadly Kari was asked to resign from the FMD Board as she was helping our family too much!!, and this was a conflicting interest! KARI ULRICH was an extremely important person on the FMD Board, and she was a great loss to them, as she had been doing the most excellent work for the Board.
With KARI’S help, all through SM, we were able to take Ashleigh to the Cleveland Clinic in June 2009. It was discovered that Ashleigh had a rare form of Intimal FMD, which is far more progressive and aggressive than FMD, and had to have a renal artery aorta bypass immediately as the stent had been crushed by her artery within 3 months of being inserted. Cleveland Clinic doctors referred to Ashleigh as a most unusual and complicated case. KARI travelled across America twice to be with Ashleigh, and support her, during her intensive testing and surgery. After Ashleigh was discharged, we had to remain in USA for a further 4 weeks, before Ashleigh was allowed the long flight home to South Africa. KARI ULRICH immediately took us into her wonderful, loving home and family, and cared for Ashleigh and myself, both physically, emotionally and financially. With KARI’S nursing experience, she picked up a thrombosis in Ashleigh’s leg where the vein had been removed for the bypass, and with her husband, DR MICHAEL ULRICH’s assistance arranged the necessary treatment and corresponded with Ashleigh’s doctors at Cleveland Clinic about Ashleigh’s treatment.
KARI, Ashleigh and our family have kept in contact via SM, since then, and KARI ULRICH has advised and helped with every problem Ashleigh has encountered. Ashleigh needs to return to Cleveland Clinic very urgently to have her mesenteric artery bypassed and repairs to her aorta where her mesenteric and celiac arteries have the same origin and come off the aorta too low down. She is also needing her previous renal artery bypass attended to as this dilated to 4 times its original size within 10 months. KARI ULRICH is already making plans for warm clothing for us, as we will be there in December, planing to be with Ashleigh in Cleveland, and also for us to be with her family for Christmas, if we are still in USA
Our Medical Aid will still not assist us and with the help of KARI and SM, we are fundraising madly to get the finances to pay for Ashleigh’s surgery. Through SM we have managed to meet incredible people who have opened their hearts to Ashleigh, and I am using the info from SM to try and motivate our medical aid to assist with Ashleigh’s health care, as she will have to return to Cleveland Clinic regularly to have diseased arteries bypassed, and there are no doctors or facilities In South Africa for this to be done.
COLLEEN BOTHA, Port Elizabeth, South Africa

Matthew Katz, MD says:
July 23, 2011 at 11:15 pm
Dear Colleen:
Social media has clearly been a great support to you and Ashleigh, for whom it has already had lifesaving benefits.
I know KARI ULRICH from online communication and she’s wonderful, clearly an excellent advocate for your daughter. There has to be ways we can learn to use social media to help people like your daughter, and I find it both perplexing and frustrating.

Thank you for your kind reply Matthew. Thank you for your concern, and with the help of SM, I will continue my fight to give Ashleigh the best life possible. Thank you.

*
Matthew Katz, MD says:
July 24, 2011 at 9:49 pm

As a parent, I fully understand your desire to find any way to bring your daughter back to her doctors for help. I wish both you and Ashleigh the easiest, swiftest path to get the care she needs.

PLEASE GIVE KARI THIS SCHOLARSHIP TO ENABLE HER TO CONTINUE HELPING OTHERS, SUCH AS OUR FAMILY, WHO ARE IN DESPERATE SIUTUATIONS. WE WILL NEVER BE ABLE TO THANK KARI AND HER FAMILY SUFFICIENTLY FOR WHAT SHE HAS DONE AND IS STILL DOING TO HELP HEAL OUR ASHLEIGH. I KNOW FROM EXPERIENCE THAT THERE IS NO OTHER PERSON MORE WORTHY OF THIS AWARD THAN KARI ULRICH!!!!

Jump to this post

Colleen, I am touched by your words. I cannot take credit for saving Ashleigh’s life, that was in the hands of amazing physicians at CCF and the perseverance of the Botha Family. I do agree with the correspondence you have had with Dr. Katz, “There has to be ways we can learn to use social media to help people like your daughter”. Despite Ashleigh’ illness she has become an incredible inspiration to many with FMD. The Botha family has become a voice for FMD and you have advocated with integrity and sincerity. Despite the many set backs and heartache you have faced, you continue to support and care for others. I admire your resilience despite the opposition you have faced in getting Ashleigh the quality care that she so deserves.

Liked by crbotha

REPLY

If only the world had more people like Kari! Ever wonder what HERO means? Just read the story about Asheigh. I can see Kari in the word Hero.

Liked by petedee

REPLY
@crbotha

KARI ULRICH SAVED MY DAUGHTERS LIFE!, I am the mother of the young girl from South Africa, which KARI mentions in her essay.

KARI ULRICH has to win a Scholarship for Patients and Caregivers to attend the Mayo Clinic Social Media Summit Oct. 17-21.

KARI ULRICH is still our biggest help and advisor, for us living in a country where barely anyone has even heard about FMD and there is absolutely no treatment for my daughters Intimal Fibromuscular Dysplasia.
Without KARI ULRICH we would still be in the desperate situation we were, before KARI ULRICH came to our aid,
My daughter, Ashleigh Botha, from Port Elizabeth, South Africa, became ill at 11, after 4 years of constant tests, a Neurologist suggested she be tested for Fibromuscular Dysplasia. This was confirmed, after her 7th renal artery angioplasty, and a self medicating stent had been inserted into her renal artery. We were told by doctors they could not cure it or prevent it from spreading through her arteries, and there was no treatment available, as it was a rare disease and South African doctors had never before seen it and knew nothing about the disease. We were told there was nothing more that could be done for Ashleigh.
My son immediately started “ASHLEIGH BOTHA SUPPORT AND PRAYER GROUP” on Facebook. Within hours we were contacted by KARI ULRICH, an FMD sufferer from USA, who was also a trauma sister, and on the FMD Board. This is proof how KARI used social media constantly as it was only a few hours, before we heard from her. Since that moment, KARI became Ashleigh’s life line and still is today.
There was no information on FMD in SA, and KARI explained everything about the disease to us, answered all our questions, and immediately started contacting doctors in USA who treated FMD, to find the best help for Ashleigh. KARI and I kept in contact via Facebook as well as email. KARI ULRICH made contact with Ashleigh, herself, Colin, Ashleigh’s dad, and Ashleigh’s brother and sister, Chelsea and Darren. KARI also contacted everyone close to Ashleigh, and became the most important person in our lives, and the only bit of hope we had ever been given. KARI ULRICH put us in contact with the FMD Unit at Cleveland Clinic, Ohio, and helped make all the arrangements for Ashleigh and I to get appointments with the correct doctors.
Our South African medical aid refused to assist us, as FMD is not on their data base of rare diseases, and she could not be cured. While we started fund raising here in S.A, KARI ULRICH began fundraising in America, and created a website for Ashleigh, http://www.helphealashleigh.com, as well as a HELP HEAL ASHLEIGH online shop at Cafe Press..
Sadly Kari was asked to resign from the FMD Board as she was helping our family too much!!, and this was a conflicting interest! KARI ULRICH was an extremely important person on the FMD Board, and she was a great loss to them, as she had been doing the most excellent work for the Board.
With KARI’S help, all through SM, we were able to take Ashleigh to the Cleveland Clinic in June 2009. It was discovered that Ashleigh had a rare form of Intimal FMD, which is far more progressive and aggressive than FMD, and had to have a renal artery aorta bypass immediately as the stent had been crushed by her artery within 3 months of being inserted. Cleveland Clinic doctors referred to Ashleigh as a most unusual and complicated case. KARI travelled across America twice to be with Ashleigh, and support her, during her intensive testing and surgery. After Ashleigh was discharged, we had to remain in USA for a further 4 weeks, before Ashleigh was allowed the long flight home to South Africa. KARI ULRICH immediately took us into her wonderful, loving home and family, and cared for Ashleigh and myself, both physically, emotionally and financially. With KARI’S nursing experience, she picked up a thrombosis in Ashleigh’s leg where the vein had been removed for the bypass, and with her husband, DR MICHAEL ULRICH’s assistance arranged the necessary treatment and corresponded with Ashleigh’s doctors at Cleveland Clinic about Ashleigh’s treatment.
KARI, Ashleigh and our family have kept in contact via SM, since then, and KARI ULRICH has advised and helped with every problem Ashleigh has encountered. Ashleigh needs to return to Cleveland Clinic very urgently to have her mesenteric artery bypassed and repairs to her aorta where her mesenteric and celiac arteries have the same origin and come off the aorta too low down. She is also needing her previous renal artery bypass attended to as this dilated to 4 times its original size within 10 months. KARI ULRICH is already making plans for warm clothing for us, as we will be there in December, planing to be with Ashleigh in Cleveland, and also for us to be with her family for Christmas, if we are still in USA
Our Medical Aid will still not assist us and with the help of KARI and SM, we are fundraising madly to get the finances to pay for Ashleigh’s surgery. Through SM we have managed to meet incredible people who have opened their hearts to Ashleigh, and I am using the info from SM to try and motivate our medical aid to assist with Ashleigh’s health care, as she will have to return to Cleveland Clinic regularly to have diseased arteries bypassed, and there are no doctors or facilities In South Africa for this to be done.
COLLEEN BOTHA, Port Elizabeth, South Africa

Matthew Katz, MD says:
July 23, 2011 at 11:15 pm
Dear Colleen:
Social media has clearly been a great support to you and Ashleigh, for whom it has already had lifesaving benefits.
I know KARI ULRICH from online communication and she’s wonderful, clearly an excellent advocate for your daughter. There has to be ways we can learn to use social media to help people like your daughter, and I find it both perplexing and frustrating.

Thank you for your kind reply Matthew. Thank you for your concern, and with the help of SM, I will continue my fight to give Ashleigh the best life possible. Thank you.

*
Matthew Katz, MD says:
July 24, 2011 at 9:49 pm

As a parent, I fully understand your desire to find any way to bring your daughter back to her doctors for help. I wish both you and Ashleigh the easiest, swiftest path to get the care she needs.

PLEASE GIVE KARI THIS SCHOLARSHIP TO ENABLE HER TO CONTINUE HELPING OTHERS, SUCH AS OUR FAMILY, WHO ARE IN DESPERATE SIUTUATIONS. WE WILL NEVER BE ABLE TO THANK KARI AND HER FAMILY SUFFICIENTLY FOR WHAT SHE HAS DONE AND IS STILL DOING TO HELP HEAL OUR ASHLEIGH. I KNOW FROM EXPERIENCE THAT THERE IS NO OTHER PERSON MORE WORTHY OF THIS AWARD THAN KARI ULRICH!!!!

Jump to this post

You maybe can’t take credit for saving Ashleigh’s life. but you are in GODS plan of getting her into the proper hands Cheers to you

REPLY

Way to go Kari! I work with Kari in the Midwest Women’s Vascular Advocates support group. I met her via social media nearly two years ago, shortly after my diagnosis of FMD. She was the first person I met with FMD and she’s changed my life! We probably can’t stress enough how scary it is to be diagnosed with something the doctor tells you is terribly rare, with no cure. It is a daunting, extremely fear-inducing experience.

It was social media that brought us together (a web chat via Inspire) and it is Kari’s experience with social media such as Twitter, Facebook, YouTube and the web that has brought us into contact with people from all over the world. Our mission is to support those with FMD and other non-inflamatory vascular diseases; Kari’s commitment to, passion for, and aptitude with social media is an extremely integral part.

Please consider her for this scholarship to further her depth of knowledge with social media. It is critical to the growth of MWVA and our ability to support people with this poorly understood and often dangerous disease. ~ Jennifer Moreen

REPLY
@jennifer99

Way to go Kari! I work with Kari in the Midwest Women’s Vascular Advocates support group. I met her via social media nearly two years ago, shortly after my diagnosis of FMD. She was the first person I met with FMD and she’s changed my life! We probably can’t stress enough how scary it is to be diagnosed with something the doctor tells you is terribly rare, with no cure. It is a daunting, extremely fear-inducing experience.

It was social media that brought us together (a web chat via Inspire) and it is Kari’s experience with social media such as Twitter, Facebook, YouTube and the web that has brought us into contact with people from all over the world. Our mission is to support those with FMD and other non-inflamatory vascular diseases; Kari’s commitment to, passion for, and aptitude with social media is an extremely integral part.

Please consider her for this scholarship to further her depth of knowledge with social media. It is critical to the growth of MWVA and our ability to support people with this poorly understood and often dangerous disease. ~ Jennifer Moreen

Jump to this post

Way to go Jennifer, its great you and Kari have connected and put together MWVA. Hope MWVA continues to grow and benefit all of us with vascular diseases. MWVA is a good example of the expertise Kari and you have.

REPLY
@lisafields

I’m really only one person. Could some helpful person delete one of them.
Thanks,
Lisa

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this makes me laugh HE HE HE love ya’lls humor

REPLY
@lisafields

I’m really only one person. Could some helpful person delete one of them.
Thanks,
Lisa

Jump to this post

Lisa, has a great sense of humor! If you are on twitter you can follow her @PracticalWisdom “Transforming the Ho-Hum into Compelling. Curious Rascal enjoys Brain Candy & Humble Friends Practical Wisdom~In Honor of Barry Schwartz.”
http://www.lisafieldsassociates.com/

REPLY
@afternoonnapper1

Since FMD is suspected to be so underdiagnosed, educating patients and medical providers about it is very important! Best of luck to you, and one way or another, we will get together and kick FMD’s tush.

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YES YES YES!!! ( Scored again, Kari) Isn’t great to prove negative ideas wrong?

REPLY
@afternoonnapper1

Since FMD is suspected to be so underdiagnosed, educating patients and medical providers about it is very important! Best of luck to you, and one way or another, we will get together and kick FMD’s tush.

Jump to this post

misprint on above comment / Isn’t it great to prove………

REPLY
@jennifer99

Way to go Kari! I work with Kari in the Midwest Women’s Vascular Advocates support group. I met her via social media nearly two years ago, shortly after my diagnosis of FMD. She was the first person I met with FMD and she’s changed my life! We probably can’t stress enough how scary it is to be diagnosed with something the doctor tells you is terribly rare, with no cure. It is a daunting, extremely fear-inducing experience.

It was social media that brought us together (a web chat via Inspire) and it is Kari’s experience with social media such as Twitter, Facebook, YouTube and the web that has brought us into contact with people from all over the world. Our mission is to support those with FMD and other non-inflamatory vascular diseases; Kari’s commitment to, passion for, and aptitude with social media is an extremely integral part.

Please consider her for this scholarship to further her depth of knowledge with social media. It is critical to the growth of MWVA and our ability to support people with this poorly understood and often dangerous disease. ~ Jennifer Moreen

Jump to this post

Jen- I am thankful that you have been brought into my life.
“Stay the course, light a star,
Change the world where’er you are.”- Richard Le Gallienne

REPLY

I liked this article. I found it informative on the subject of FMD and what to expect when learning that you have it.

Liked by Ben Leisen, dfeller

REPLY
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