Total Pageviews

Tuesday, November 30, 2010

Her Eyes, Written by Irene Orhbom- For Ashleigh

Ashleigh Botha of South Africa 



Her eyes are calling,
calling out to me.
Her eyes speak volumes,
that words could never describe.
Her eyes are gentle,
yet pleading.
Searching to those who walk the path before her.
Her eyes spring a spark within me,
Calling me into action.
For I am one of those who walk before her.
Her eyes bring me to tears.
For I am called to step out and
put aside my fears.
To walk the path that I have been called to walk.
Seeking out the answers
to the questions that need to be asked.
Her eyes are my inspiration.
Keep me walking even in the darkness,
of the unknown.
Keep me walking for those
who walk behind.

- Edna Irene Ohrbom-

Ashleigh Botha is a young girl from South Africa with a progressive form of Fibromuscular Dysplasia. To read more about Ashleigh and her journey please visit: www.helphealashleigh.com

Monday, November 29, 2010

What caused this patient's blurred vision? - JAAPA

Great Case Study by Robert Brach, PA-C

What caused this patient's blurred vision? - JAAPA

ACC/AHA Performance Measures Developed for Peripheral Artery Disease : Internal Medicine News

By: MARK S. LESNEY, Internal Medicine News Digital Network

' "Patients with peripheral artery disease have the highest rate of heart attacks, stroke, and cardiovascular disease – higher than people with coronary artery disease – yet they remain undertreated," Dr. Jeffrey W. Olin, professor of medicine at Mount SinaiSchool of Medicine, New York, and chair of the writing committee, said in a published statement on the report.'

ACC/AHA Performance Measures Developed for Peripheral Artery Disease : Internal Medicine News

Wednesday, November 24, 2010

In honor of Dr. Jeffrey W. Olin and his devotion to fighting Fibromuscular Dysplasia, we give Thanks!

 

As Thanksgiving is approaching there are many things that MWVA is grateful for. With that said, there is someone extraordinary who MWVA want to give thanks to.

Words alone cannot describe the difference this person has made for those affected by FMD. His dedication and devotion to Fibromuscular Dysplasia goes above and beyond and for this we are grateful.

Today we give thanks to
Dr. Jeffery Olin of Mount Sinai Medical Center, New York.
Please, this Thanksgiving raise a toast in honor of the many achievements and accomplishments that have been made because of the dedication of this truly remarkable physician.

In Honor of Dr. Olin, I give you his 10 ten list with a bit of twist:

Dr. Olin’s Top 10 List
Top 10 Mistakes in FMD Diagnosis & Treatment

10. Not listening to the neck with a stethoscope during physical examination

9. Not performing an MRA of the brain in patients with carotid artery FMD

8. Performing an angioplasty and telling the patient the artery is normal by looking at it

7. Telling the patient (and their doctors) that they can determine the degree of narrowing of an artery by looking at an angiogram

6. Telling patients with severe headaches with FMD that there is nothing that you can do for them

5. Telling patients that the symptoms are all in their head

4.Telling patients there are no experts in FMD

3. Telling the patients that FMD is a rare disease

2. Telling patients that FMD is a fatal disease with no treatment

1. Not VOTING for MWVA RefreshEverything so this important work can continue!
Don't forget to vote Daily! Text 103887 to Pepsi (73774)

or log on through Facebook at: http://www.refresheverything.com/mwva
Leave us a note and let us know you were there!

Happy Thanksgiving,

Kari & Jennifer

Understanding Fibromuscular Dysplasia

By Dr. Williams, B.Sc, PhD, Medical Student, Nutrition, Fitness Trainer, Health Advisor


Dr. Williams BLOG Click here:http://drrickywilliams.wordpress.com/

Fibromuscular dysplasia (FMD) is a non-atherosclerotic, non-inflammatory vascular disease in which at least one of your arteries has an abnormal cluster of cells growing in the artery wall.  This cluster causes the artery to narrow (stenosis), such as arteries in the kidneys (renal artery), arteries to the brain (carotid artery/vertebral artery) and less commonly the arties that supplies the abdomen (abdominal aorta), which can cause damage to the organs that, receive blood through the narrowed artery. FMD is so poorly understood by many healthcare providers, treatment is often not optimal, leading to impaired quality of life and potential serious number of complications, such as hypertension, stroke, myocardial infarction (heart attack), aneurysms (arterial swelling) and arterial dissection, if left untreated.A few thousand cases have been confirmed in the U.S., but some experts believe it affects up to 5% of the population. When presumably healthy kidney donors are screened with X-rays, FMD has been found in close to 4%. In individuals with FMD, the cells in the walls of the arteries undergo abnormal growth. As a result, the inner passage of the vessels may become narrowed. This can cause symptoms if the blood flow is decreased enough. However, FMD is often diagnosed incidentally in the absence of any signs or symptoms during an imaging study. When the vessel is filled with dye for an X-ray, it will show a characteristic “string of beads” appearance.


What is Dysplasia
The word “dysplasia” simply means abnormal cellular development or growth.

What is Arterial Dissection
Arterial dissection refers to a tear within the wall of a blood vessel (tunica media), which allows blood to separate the wall layers, creating a pseudoaneurysm (dissecting hematoma).
A pseudoaneurysm, also known as a false aneurysm, is a hematoma (localized swelling filled with blood) that forms as the result of a leaking hole in an artery. Note that the hematoma forms outside the arterial wall, so it is contained by the surrounding tissues. Also it must continue to communicate with the artery to be considered a pseudoaneurysm. This must be distinguished from a true aneurysm, which is a localized dilatation of an artery including all the layers of the wall. A pseudoaneurysm is also different from an arterial dissection, which is a separation of the layers the arterial wall, and may be associated with later aneurysm formation. The most common location for a true left ventricular aneurysm involves the apex of the heart.

What causes FMD
There is a very strong likelihood that there is a genetic basis for the development of FMD but not all individuals with FMD have a family member with the disease. Other possible causes of FMD include abnormal development of the arteries that supply the vessel wall with blood resulting in inadequate oxygen supply; the anatomic position of the artery within the body and tobacco use.  It is likely that many factors are involved in the development of FMD.  This area requires further research.

Genetic Prevalence of FMD
Fibromuscular dysplasia is an autosomal dominant disorder. It tends to occur between 14 and 50 years of age, but it has also been found in children younger than age 14. In one study, women are affected more often than men.

Angiographic & Pathological Types
There are three major types of FMD:
  1. Medial dysplasia
  2. Intimal fibroplasia
  3. Adventitial (periarterial) fibroplasia.
Although this classification system was initially developed for renal artery stenosis, it can be applied to all arteries. Medial dysplasia can itself be divided into three subgroups:
  1. Medial fibroplasia
  2. Perimedial fibroplasia
  3. Medial hyperplasia

 Medial fibroplasia is the most common form (accounting for 80–90% of all types of FMD) and is characterized by a ‘string of beads’ appearance on angiography. The size of the ‘beads’ usually exceeds that of the artery and involves the medial layer in the mid-to-distal portion of the vessel.

Histopathology

Fibromuscular dysplasia is characterized by fibrous thickening of the intima, media, or adventitia of the artery. Up to 75% of all patients with FMD will have disease in the renal arteries. The lesions cause narrowing of the artery lumen. The second most common artery affected is the carotid artery, which is found in the neck and supplies the brain with blood. Less commonly, FMD affects the arteries in the abdomen (supplying the liver, spleen and intestines) and extremities (legs and arms). More than one artery may have evidence of FMD in 28% of people with this disease. All arteries should be checked if found.

Signs and Symptoms

FMD of Renal Arteries (Kidney):
  1. High blood pressure
  2. Abnormal kidney function as detected on blood tests
  3. Flank pain from dissection or infarction of the kidney
  4. Kidney failure (rare)
  5. Shrinkage (atrophy) of the kidney

FMD of Carotid Arteries:
  1. Bruit (noise) heard in neck with stethoscope
  2. Swooshing sound in ear
  3. Ringing of the ears
  4. Vertigo (room spinning)
  5. Dizziness
  6. Headache
  7. Transient ischemic attack (TIA)
  8. Stroke
  9. Neck pain
  10. Horner’s syndrome
  11. Arterial Dissection
People with carotid FMD have a higher risk for intracranial aneurysms (abnormal dilations of the arteries in the brain).  An intracranial hemorrhage (bleeding in the brain) may occur if an aneurysm ruptures.  FMD involving the mesenteric arteries (arteries that supply the intestines, liver and spleen with blood) can result in abdominal pain after eating and unintended weight loss.  FMD in the arms and legs can cause limb discomfort with walking or arm use (intermittent claudication), cold limbs, weakness, numbness or pain.
NOTE: Horner’s syndrome is a pattern of symptoms occurring as a result of damage to the nerves in the cervical region of the spine (drooping eyelids and constricted pupils and absence of facial sweating).

How can FMD be Diagnosed
There are a number of methods that can be used to detect FMD. These include computed tomographic angiography (CTA) and magnetic resonance angiography (MRA), ultrasound, and catheter based angiogram.  The experience and expertise available at your medical institution will play an important role in what diagnostic options are available to you. In the most common form of FMD (medial fibroplasia), a characteristic “String of Beads” appearance is seen in the affected artery.  This appearance is due to changes in the cellular tissue of the artery wall that causes the arteries to alternatively become narrow and dilated.  A less common, but more aggressive form of FMD may cause an area of severe concentric narrowing of the blood vessel (intimal fibroplasia) or long smooth narrowing.

Treatment
There is no cure for FMD.  However, in some cases an attempt should be made to improve the flow of blood through the vessel.  The kind of treatment used for FMD depends largely upon which arteries are affected and the presence and severity of the signs or symptoms. If your health care professionals feel that treatment is warranted, most often percutaneous transluminal angioplasty (PTA) is preferred.  PTA is often performed at the same time as an arteriogram.  Arteriography is a procedure that is performed by a vascular specialist (interventional radiologist, neuroradiologist, vascular surgeon, vascular medicine specialist or cardiologist) with appropriate training. It involves inserting a small tube into or near the affected artery and injecting contrast material, a dye that can be detected by an X-ray machine.  An x-ray of the affected area is then taken and examined.  If an angioplasty is performed, a catheter is extended into the affected artery and a small balloon is inflated that opens the vessel in the area of narrowing.   A metal stent is typically not required to keep the vessel open and under most circumstances should only be used if angioplasty alone was not successful or to treat a dissection (tear) of the artery.

Most individuals should take an antiplatelet agent daily (i.e., aspirin).  All patients who use tobacco should be encouraged to quit. The appropriate treatment will vary with each individual and severity of disease.  It should be discussed in depth with a specialist who is knowledgeable about FMD.



Tuesday, November 23, 2010

Let's Fight Fibromuscular Dysplasia Together: 7 Days to Vote

CLICK HERE TO VOTE

Thank you for your support, it means the world to each of us affected by FMD. It is not just the person diagnosed with FMD that it affects, it is our family and friends too.

We are so overwhelmed by the support we have received, from Genetics Alliance to people whom have posted comments from all over the world.

Each of you have made a difference in our lives and for that we thank you.

WE NEED DAILY VOTES!
Text 103887 to Pepsi (73774) OR
Visit: www.refresheverything.com/mwva
Leave us a note and let us know you were there!
Thanks, Kari and Jennifer

Jennifer Moreen 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 Ulrich 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.

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

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?




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 By ASHLEY PETERSON

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.

MWVA Co-founder Jennifer Moreen, MWVA Medical Advisor Christopher A. Foley MD, MWVA Co-Founder Kari Ulrich RN