Monday, November 22, 2010
Sunday, November 21, 2010
Thursday, November 18, 2010
Are women treated equally in the health care setting when it comes to vascular disease?
I asked a group of women the following questions here is their response:
I have heard two things from new patients:
1. There doctor does not take their symptoms seriously
2. That they are frequently given misinformation regarding their disease
Shirley- (FMD) "this is my life to a tee"
Harriet -“My FMD is in my vertebral arteries...was told by the vascular doc...that this is no big deal, and don't go home & start reading stuff on the Internet!”
Deb - (FMD, Aneurysms 2 coiled) "Before my diagnosis, the doctor I had been seeing for seven years questioned me as to WHAT I WAS DOING to cause my symptoms.
I never saw him again and was diagnosed 3 weeks later by a different doctor"
Susan - "I waited in the E.R. for over 6 hours before a test was performed. They brushed me off because ,and I am quoting a Dr. "you are young,healthy, thin & you dont smoke".You should have seen the look on his face when he saw me walking down the hall in the trauma unit 2 days later! my first episode I was told it is like "lightening..never strikes twice". 2 years later I had my second dissection. It was not until then a test was performed to diagnose me with FMD"
Irene- "When I was first diagnosed in July 2004. I was given misinformation. I was told that FMD only involved the renal arteries and that one angioplasty would cure me of the disease. Sadly for the first two years my carotids were not checked . In six years I have had 6 angioplasties of my renal arteies and will most likely need them in the future. As far as point number one goes I had a vascular surgeon say that I did not need to have followup check ups on my renal FMD, had a neurologist tell me that FMD does not cause stroke ( After I had a TIA) and ER doctors who had never heard of the disease the good point is I have also had ER doctors who are well informed."
Emily- " My cardiologist picked up on my FMD right away in August of this year. One week later he did an angioplasty on my renal artery, he really amazed me! It's my nephrologist that was ignorant. She didnt want to hear anything that I had to say about FMD. She said that I most likely didnt have it because I'm to old to have it (I'm 39yrs old to be exact) Then she said its to rare and its not what I had. I told her that I even saw the beaded effect. She just kept shaking her head saying no and then she said my dr. should have put in a stent then if it was FMD. I walked out of her office today and cried!!!! Can we send her a pamphlet on FMD?"
Lyn- "I was diagnosed 2 years ago and pretty much was told it was no big deal. It was only because of my research online and insistence that I have additional tests done that I found that I have FMD in 8 arteries with aneurysms on 2. Very frustrating - cannot find a doctor in the Seattle area that takes this seriously"
As a women's vascular advocate I hear a recurring theme that physicians are not taking women's vascular symptoms seriously. This is leading to women sent home from the er while having a stroke or dissection. Hard to believe in this day and age, but it is true. Why? What is being missed in diagnosing women with vascular disease both in the acute care and ambulatory care setting? What can be done to change this?
I have heard two things from new patients:
1. There doctor does not take their symptoms seriously
2. That they are frequently given misinformation regarding their disease
Shirley- (FMD) "this is my life to a tee"
Harriet -“My FMD is in my vertebral arteries...was told by the vascular doc...that this is no big deal, and don't go home & start reading stuff on the Internet!”
Deb - (FMD, Aneurysms 2 coiled) "Before my diagnosis, the doctor I had been seeing for seven years questioned me as to WHAT I WAS DOING to cause my symptoms.
I never saw him again and was diagnosed 3 weeks later by a different doctor"
Susan - "I waited in the E.R. for over 6 hours before a test was performed. They brushed me off because ,and I am quoting a Dr. "you are young,healthy, thin & you dont smoke".You should have seen the look on his face when he saw me walking down the hall in the trauma unit 2 days later! my first episode I was told it is like "lightening..never strikes twice". 2 years later I had my second dissection. It was not until then a test was performed to diagnose me with FMD"
Irene- "When I was first diagnosed in July 2004. I was given misinformation. I was told that FMD only involved the renal arteries and that one angioplasty would cure me of the disease. Sadly for the first two years my carotids were not checked . In six years I have had 6 angioplasties of my renal arteies and will most likely need them in the future. As far as point number one goes I had a vascular surgeon say that I did not need to have followup check ups on my renal FMD, had a neurologist tell me that FMD does not cause stroke ( After I had a TIA) and ER doctors who had never heard of the disease the good point is I have also had ER doctors who are well informed."
Emily- " My cardiologist picked up on my FMD right away in August of this year. One week later he did an angioplasty on my renal artery, he really amazed me! It's my nephrologist that was ignorant. She didnt want to hear anything that I had to say about FMD. She said that I most likely didnt have it because I'm to old to have it (I'm 39yrs old to be exact) Then she said its to rare and its not what I had. I told her that I even saw the beaded effect. She just kept shaking her head saying no and then she said my dr. should have put in a stent then if it was FMD. I walked out of her office today and cried!!!! Can we send her a pamphlet on FMD?"
Lyn- "I was diagnosed 2 years ago and pretty much was told it was no big deal. It was only because of my research online and insistence that I have additional tests done that I found that I have FMD in 8 arteries with aneurysms on 2. Very frustrating - cannot find a doctor in the Seattle area that takes this seriously"
As a women's vascular advocate I hear a recurring theme that physicians are not taking women's vascular symptoms seriously. This is leading to women sent home from the er while having a stroke or dissection. Hard to believe in this day and age, but it is true. Why? What is being missed in diagnosing women with vascular disease both in the acute care and ambulatory care setting? What can be done to change this?
Wednesday, November 17, 2010
Giving Thanks
With Thanksgiving around the corner Jennifer Moreen and Kari Ulrich have a lot to be Thankful for!
Jennifer Moreen of Minnesota suffered her first heart attack at age 38 due to undiagnosed Fibromuscular Dysplasia (FMD). After placement of 6 coronary stents at the age of 40 she has devoted her life to helping others. At age 39 Kari was training for a 1/2 marathon when she developed symptoms that led to the diagnosis of FMD. Together Jennifer & Kari Ulrich founded Midwest Women's Vascular Advocates.
Midwest Women’s Vascular Advocates is a group of women diagnosed with Fibromuscular Dysplasia (FMD) a non-inflammatory vascular disease. FMD causes artery walls to be malformed, causing extreme damage to organs, high blood pressure, strokes, heart attacks and more.
Founders of MWVA include:
Jennifer Moreen, Jennifer is a FMD patient diagnosed after a major heart dissection that led to a heart attack. She has over 10 years experience in the Non-Profit sector and currently works in Human Resources Management. Her education includes: Loyola University of Chicago and St. Thomas University of Minnesota
Kari Ulrich RN, Kari is a FMD patient diagnosed with widespread FMD and MALS. She was a practicing emergency room nurse. She has served on the FMDSA Board of Directors and currently advocates for a young girl in South Africa with a progressive form of FMD. Her education includes: College of St. Catherine/ SMC School of Nursing of Minnesota
MWVA submitted for a Grant through Pepsi Refresh Everything. Vote daily from November 1st - 30th 2010.
Midwest Women’s Vascular Advocates (MWVA) has applied for a Pepsi Refresh Project grant of $50,000 in the health category, to help fund three projects. Starting Nov 1- 31 voting can be done at: http://www.refresheverything.com/mwva
The Grant would be used to support the following:
$20,000 to MWVA mission
$ 15,000 for Research Biorepository Mayo Clinic
$ 15,000 for research FMD Registry at the University of Michigan
MWVA mission is to support and educate women affected by Fibromuscular Dysplasia (FMD) and non-inflammatory vascular diseases.
Non-inflammatory vascular disease can affect anyone, it does not discriminate. Men, women and children are being diagnosed everyday yet the support for women is minimal. MWVA wants to change that.
Please help us make a difference.
For additional information on Midwest Women’s Vascular Advocates please visit our website at www.mwva.org
Albert Lea Tribune:
Peoples Press Owatonna:
KIMT News channel 3: http://t.co/EHww6QP
Saturday, November 13, 2010
Local support group in running for Pepsi Refresh grant Posted: Tuesday, November 9, 2010 9:16 pmBy ASHLEY PETERSON
apeterson@owatonna.com
apeterson@owatonna.com
OWATONNA — It was the diagnosis of fibromuscular dysplasia (FMD) — a deadly disease — in two Minnesota women that inspired first a friendship, then the creation of a support group and now an opportunity to earn $50,000 in grant funding from the Pepsi Refresh Project.
When diagnosed, Kari Ulrich and Jennifer Moreen were two women in their 30s who could have been poster women for healthy and active lifestyles. Moreen was an avid skier and Ulrich was training for a half marathon when they were diagnosed with FMD in 2009 and 2007, respectively. The disease is one that limits their ability to perform high-impact sports and requires extreme caution in daily activities, such as laying their heads in a sink at the salon and lifting anything more than 10 pounds.
“When I was diagnosed, my doctor said ‘Oh you look too healthy to have anything wrong,’” Ulrich said. “There’s been a huge struggle with patients with FMD because friends and families don’t understand. It’s such a misconception that you’re healthy when you feel like a walking time bomb.”
In April of 2009, Moreen was driving through Wyoming with her husband, on their way back from a ski trip in Utah, when she had a heart attack. She was 38 years old.
“The ER doctor kept me there, suspecting I had a heart problem,” she recalled. “I didn’t have typical risk factors they look for in heart disease, yet tests showed I had a heart attack.”
Doctors discovered Moreen’s right coronary artery had torn and required four stints in the artery. After she went home and tried to return to normal, there was an additional coronary artery dissection that required a fifth stint.
“By now, I was like ‘You’ve got to be kidding me,’” she said. “I wanted a second opinion. A simple CT scan ended up showing FMD in my iliac arteries in my abdomen, my right kidney, heart and both carotid arteries in my neck.”
FMD is a non-inflammatory vascular disease that affects artery wall development. There is no plaque buildup with FMD — the problem exists in the artery itself. Instead of a long and straight artery, women affected by FMD have arteries that look more like a string of beads with webbing inside that blocks blood flow and is susceptible to tearing.
It wasn’t until a year ago, in November 2009, that Ulrich and Moreen crossed paths. The women first connected in an online support website called “Inspire,” sharing the FMD diagnosis and joining together to create a support group in the Midwest for women who have the disease and are searching for a place to gather more information and become educated about a disease that often goes undiagnosed in women ages 15-50.
Both from Minnesota — Moreen lives in Plymouth, Minn. and Ulrich in Albert Lea — the women began messaging each other about their interest in creating a FMD support group. They finally had the first meeting in April 2010.
“It choked me up because I had never met anyone with FMD before. That was really cool,” Moreen said, getting emotional about the impact the group has had on her.
The organization is dedicated to supporting women with vascular disease and aims to meet once every six months at Mayo Health System’s Albert Lea Medical Center. Currently, the organization is running with no budget or funding — Moreen and Ulrich donate their time and money to organize the group and schedule doctors or other educational speakers to engage those who attend.
In an attempt to first and foremost educate women and their families about the affects of FMD ,and secondly to gain funding for the group, Moreen and Ulrich have applied for a Pepsi Refresh Project grant.
“It’s very difficult to have your grant application accepted to the project,” Moreen said. “They accept only 1000 applications from across the country once a month and you have to stay up until midnight to apply.”
After two or three months of application denial, the women’s application for Minnesota Women’s Vascular Advocates was finally accepted with 999 other applications for part of November’s $1.3 million in grants. Under the health category, the MWVA group has applied for $50,000 in funding that would benefit women across the Midwest.
The group creators said their first two meetings had women with FMD and their loved ones from Minnesota, Michigan and Iowa in attendance, so the grant would help people in a tri-state region and beyond. In order to receive the $50K in funding, the group must receive enough votes through the month of November to be in the top 10 of the $50K category. It is a popularity contest — those who gain the most votes over the period of one month will receive the funds.
“We’re just trying to get the word out as much as we can,” Ulrich said. “Not just to get people to vote, but learn what we’re trying to do. We want people to know we’re out here because there are others out there with this disease and they don’t know we’re here.”
Voting will be open through Nov. 30 and the top 10 winners will be announced Dec. 1. To vote, visit www.refresheverything.com and search under the health category organized by the $50,000 request. The title of the group’s application is “Start an organization dedicated to support women with vascular disease.” The project has already granted $10.6 million to organizations and projects across the country.
Ashley Peterson can be reached at 444-2378.
When diagnosed, Kari Ulrich and Jennifer Moreen were two women in their 30s who could have been poster women for healthy and active lifestyles. Moreen was an avid skier and Ulrich was training for a half marathon when they were diagnosed with FMD in 2009 and 2007, respectively. The disease is one that limits their ability to perform high-impact sports and requires extreme caution in daily activities, such as laying their heads in a sink at the salon and lifting anything more than 10 pounds.
“When I was diagnosed, my doctor said ‘Oh you look too healthy to have anything wrong,’” Ulrich said. “There’s been a huge struggle with patients with FMD because friends and families don’t understand. It’s such a misconception that you’re healthy when you feel like a walking time bomb.”
In April of 2009, Moreen was driving through Wyoming with her husband, on their way back from a ski trip in Utah, when she had a heart attack. She was 38 years old.
“The ER doctor kept me there, suspecting I had a heart problem,” she recalled. “I didn’t have typical risk factors they look for in heart disease, yet tests showed I had a heart attack.”
Doctors discovered Moreen’s right coronary artery had torn and required four stints in the artery. After she went home and tried to return to normal, there was an additional coronary artery dissection that required a fifth stint.
“By now, I was like ‘You’ve got to be kidding me,’” she said. “I wanted a second opinion. A simple CT scan ended up showing FMD in my iliac arteries in my abdomen, my right kidney, heart and both carotid arteries in my neck.”
FMD is a non-inflammatory vascular disease that affects artery wall development. There is no plaque buildup with FMD — the problem exists in the artery itself. Instead of a long and straight artery, women affected by FMD have arteries that look more like a string of beads with webbing inside that blocks blood flow and is susceptible to tearing.
It wasn’t until a year ago, in November 2009, that Ulrich and Moreen crossed paths. The women first connected in an online support website called “Inspire,” sharing the FMD diagnosis and joining together to create a support group in the Midwest for women who have the disease and are searching for a place to gather more information and become educated about a disease that often goes undiagnosed in women ages 15-50.
Both from Minnesota — Moreen lives in Plymouth, Minn. and Ulrich in Albert Lea — the women began messaging each other about their interest in creating a FMD support group. They finally had the first meeting in April 2010.
“It choked me up because I had never met anyone with FMD before. That was really cool,” Moreen said, getting emotional about the impact the group has had on her.
The organization is dedicated to supporting women with vascular disease and aims to meet once every six months at Mayo Health System’s Albert Lea Medical Center. Currently, the organization is running with no budget or funding — Moreen and Ulrich donate their time and money to organize the group and schedule doctors or other educational speakers to engage those who attend.
In an attempt to first and foremost educate women and their families about the affects of FMD ,and secondly to gain funding for the group, Moreen and Ulrich have applied for a Pepsi Refresh Project grant.
“It’s very difficult to have your grant application accepted to the project,” Moreen said. “They accept only 1000 applications from across the country once a month and you have to stay up until midnight to apply.”
After two or three months of application denial, the women’s application for Minnesota Women’s Vascular Advocates was finally accepted with 999 other applications for part of November’s $1.3 million in grants. Under the health category, the MWVA group has applied for $50,000 in funding that would benefit women across the Midwest.
The group creators said their first two meetings had women with FMD and their loved ones from Minnesota, Michigan and Iowa in attendance, so the grant would help people in a tri-state region and beyond. In order to receive the $50K in funding, the group must receive enough votes through the month of November to be in the top 10 of the $50K category. It is a popularity contest — those who gain the most votes over the period of one month will receive the funds.
“We’re just trying to get the word out as much as we can,” Ulrich said. “Not just to get people to vote, but learn what we’re trying to do. We want people to know we’re out here because there are others out there with this disease and they don’t know we’re here.”
Voting will be open through Nov. 30 and the top 10 winners will be announced Dec. 1. To vote, visit www.refresheverything.com and search under the health category organized by the $50,000 request. The title of the group’s application is “Start an organization dedicated to support women with vascular disease.” The project has already granted $10.6 million to organizations and projects across the country.
Ashley Peterson can be reached at 444-2378.
MWVA Co-founder Jennifer Moreen, MWVA Medical Advisor Christopher A. Foley MD, MWVA Co-Founder Kari Ulrich RN
Thursday, November 4, 2010
Power 96 Morning Show with Jay Paul KQPR 96.1 FM Supporting MWVA!
Please take a moment to listen to what MWVA is doing to fight against Fibromuscular Dysplasia!
MWVA would like to thank Jay Paul and the "Power 96 Morning Show" for all their support! KQPR 96.1 FM
MWVA would like to thank Jay Paul and the "Power 96 Morning Show" for all their support! KQPR 96.1 FM
Wednesday, November 3, 2010
MWVA Pepsi Refresh Everything & KIMT News Channel 3
Please Vote DAILY for MWVA and our Pepsi Refresh Project View KIMT News Channel 3: Pepsi Refresh Heart Disease
Jennifer Moreen and I want to raise awareness of something exciting that is happening in the month of November. Midwest Women's Vascular Advocates has applied for a Pepsi Refresh Everything Grant, and I am excited to announce that our application was accepted. Now for the hard part, getting people to vote. The grant is a popularity contest, and the top 10 applicants (those with the most votes) in our grant category of $50K will receive the grant. Our goal is to try and spread awareness to our mission as well as get daily votes from the public.
Non-inflammatory vascular disease can affect anyone, it does not discriminate. Men, women and children are being diagnosed everyday yet the support for women is minimal.
MWVA applied for a Pepsi Refresh Everything grant to so that we could continue with our mission. The importance of this group really hit home in the past week when 3 of our members became hospitalized with stroke, arterial dissection and heart problems. Our support group has grown, and will continue to grow as more women are being diagnosed. Not only do we support these women, we offer support to the whole family.
Our mission: To support and educate women affected by FMD and non-inflammatory vascular diseases has been solely supported through volunteerism.
Yes, this is a popularity contest which will bring awareness to unpopular disease!
ADVOCATE: Change thousands of lives by supporting those with FMD.
EDUCATION: about 3-5% of the population has FMD, most undiagnosed
To provide Advocacy and Education at no charge to those afflicted. Help fund research for those afflicted with FMD
Plan: Hold meetings twice a year with potential to increase depending on group needs. The meetings will consist of open discussions, guest speakers and workshops. The meeting will give everyone, including family members, the opportunity to learn more about vascular disease, to ask questions, and to exchange their personal stories and feelings. Provide meetings free of charge.
Web Site www.mwva.org Goal: Educating and peer support/mentoring for women, with the possibility of expanding into non-profit 501c (3) organization promoting public awareness of women’s vascular disease.
How will the 50K be Used?
$ 6,000 Stipends for qualified speakers and experts
$ 6,000 Educational materials, conference expenses
$ 4,000 start up costs non-profit, employees, ie grant fundraising,accountant
$ 4,000 communications- computers, phone, equipment
$ 15,000 International Patient Registry at University of Michigan, Ann Arbor
$ 15,000 Mayo Clinic FMD Biorepository, Vascular Study
Ways to vote: Log into Pepsi Refresh and Vote Daily until Nov 30th Here:
Vote from your mobile phone: Text* 103887 toPepsi (73774) *Standard text messaging rates apply.
Visit our website: http://www.refresheverything.com/mwva
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