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Thursday, October 28, 2010

Volunteerism in Health Care

Many people ask me what can I do to make a difference in spreading awareness for FMD
My answer: What CAN you do? 

There is usually a pause and then some great idea pops into their head... "well I could contact my local newspaper.... I could bring information to my local hospital" Each individual has their own talents and comfort level at what they are willing to do. We must embrace one's individuality and encourage peoples unique talents. Volunteering is contagious and once you start it is amazing what you can accomplish.  

Recently Midwest Women's Vascular Advocates (MWVA) was featured on a great site "The Blogunteerwritten by Stacy Pearson. The Blogunteer gives organizations a place to be recognized and shared. Please take a moment to visit The Blogunteer :

Tuesday, October 26, 2010

FMD does not define me

I was diagnosed with FMD in 2007. With that diagnosis came an identity crisis... I am now someone with a chronic disease.... I am no longer who I was yesterday, before my diagnosis. I considered myself active, energetic- a few complaints here and there but not someone with a life threatening condition. After being diagnosed I went through the five stages of grief, just like anyone else who has lost something- I lost my identity. Elisabeth Kubler- Ross was my new friend.
Denial-  I thought really how serious can it be to have your carotid arteries 75 % stenosed bilaterally... I know my blood is flowing because I can hear the bruit in my ear. I was diagnosed with brain aneurysms. My thoughts on this,  well many people go through life without realizing they have them - I am really lucky because I know that mine are located off the M1 branch!
I quickly moved to Anger- How did I get this and why? Who can I blame... genetics, environment... who's fault is this that I have to live in fear of dissection, stroke, having the possibility of loosing a kidney... my identity quickly changed to "Crabby Mama" according to those who love me. I would say this stage lasted about 6 months after my initial diagnosis.

Next came the Bargaining-  I devoted the next two years of my life to FMDSA (Fibromuscular Dysplasia Society of America) my identity was now a position on the Board of Directors for FMDSA. I gave my time and money, thinking if I just give a little bit more we will find a cure to this chronic vascular disease. I wrote letters to all the top 100 hospitals about FMD then started my goal to educate every hospital I could find via the internet. I attended conferences to educate physicians, I spoke with other patients, I raised money... but none of that took away my fear of what will it feel like if I dissect an artery, how will I take care of my boys if I have a stroke... will I end up in a  nursing home at the age of 40 unable to care for myself, how will my husband cope?

Fear has a way of leading into Depression- and my identity took a step back to someone with a chronic illness. I stepped down from the FMDSA board to pursue helping a young girl from South Africa with a progressive form of FMD, Ashleigh. I will forever be grateful for the inspiration and motivation Ashleigh gave me. She gave me a gift that I will never be able to repay. She gave me the gift of courage and perseverance. She showed me that her disease did not define her what a tremendous lesson this 16 year old taught me.
It is now 2010 and I can say with confidence that I have finally reached the final stage - Acceptance. I know it is going to be ok. I can't change the fact that I have this disease but I can prepare for what lies ahead, the unknown. I can do this by focusing on my true identity... I am wife, a mother, a friend and an advocate. I love spending time with my rescued animals, running, reading and laughing with my friends. I am not someone with a chronic illness I am so much more than that.

Monday, October 25, 2010

Dear Doctor

Dear Drs,

I am writing to you today on behalf of patients diagnosed with Fibromuscular Dysplasia (FMD).
We want you to know that FMD is a vascular disease that is non-inflammatory in nature. FMD causes artery stenosis.  We understand if you have not heard of our disease before, it is under diagnosed and you are fortunate if you heard about FMD in med school. Please don't judge us because we "look healthy", many of us have been sent home from the ER with dissections, and end up with strokes. This can be prevented. Our general population is young women. Many of us are physically fit, eat healthy diets and we do not fit the stereo type of someone with a inflammatory vascular disease.

One of our frustrations as patients is that we do not receive the proper care and follow up. At this time there is no treatment protocol, but that will change in the near future. Until then we need to be vigilent in our health care. We have discovered that because there is little known about our disease that we have to advocate for ourselves. You will discover rather quickly that as patients we are very informed about our disease and how to manage it. We need your help and guidance in managing our care. We rely on your experience and education to guide us through the many decisions we must make to ensure that we have the quality of life we desire. We are asking to be partners in our health care.
Mayo Clinic Rochester ICU post op celiac bypass
Here our some of our greatest needs:

1.  FMD patients would like to have some kind of plan of care,  a
written form of follow up with what is needed to monitor their disease.
ie All patients with carotid FMD being put on a surveillance program of
every 6 months ultrasounds,  and have a MRA to check for intracranial
aneurysms. (we understand this will greatly depend on each patient as we
are all so unique.) Also communication with their primary care doctor is
important to them.

2.  When patients go to the doctor they would like to receive some form of
information regarding FMD, a handout something tangible. Cleveland
Clinic has written up a four page handout outlining the types of FMD,
How it is diagnosed, What treatments are available, etc.  They give this
out with a folder that contains information on vascular disease to newly
diagnosed patients.

3.  At some point patients  would like to see a team of doctors
interested in FMD that can address all their needs.  Many of us have
overlapping connective tissue issues that seem to contribute to our
overall well being.

I understand what we are asking for comes at a cost, but I do believe
the revenue generated from FMD patients for monitoring our disease is imperative.
Preventing a future event ie stroke, dissection, loss of kidney
will help reduce the cost of of our care.

I appreciate you taking the time to read this blog.

Warmest Regards,

Kari Ulrich RN,  FMD Patient
Midwest Women's Vascular Advocates

Wednesday, October 20, 2010

Help save a life!

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. Jennifer and I want to change that. Please help us make a difference.
MWVA applied for this 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.  What we are asking for is your vote and support if we are chosen for this grant. Yes, this is a popularity contest which will bring awareness to unpopular disease! I will be sending out reminders frequently- so please be patient with us. 
Here is the process:
 1. MWVA applied for a Pepsi Refresh Grant, we will know if we got in on November 1! 
 2. We will need your daily votes and support by spreading the word. 

 3. We applied for a grant under the Health Care for $50,000- you will be able to find us with the URL:
or by doing a search for fibromuscular dysplasia or midwest women's vascular advocates
How will the grant be used?
 $15,000 Mayo Clinic with collaboration of Cleveland Clinic Biorepository 
That is $30, 000 that will go directly to needed RESEARCH!
 $20, 000 to continue MWVA mission so that we can continue to do our advocating on behalf of women and their families!
Thank you all for your support!
Kari Ulrich RN and Jennifer Moreen 
Founders- Midwest Women's Vascular Advocates
Please take a look at our website to see what we have been doing:

Monday, October 18, 2010

Pass this on to your health care provders

Note: Fibromuscular Dysplasia and Rare Connective Disorders - Heather L. Gornik, MD

Cleveland Clinic Foundation: Management of Connective Tissue Disorders and Latest Research:

Bicuspid Valves, Marfan Syndrome, Loeys-Dietz Syndrome, Ehlers-Danlos, and Related Diseases


This course is designed to educate physicians and patients on the latest genetic findings for various connective tissue disorders, including Marfan Syndrome, bicuspid valves, Loeys-Dietz Syndrome, Ehlers-Danlos Syndrome, and describe advances in management strategies for patients with these disorders.

The course will present expert didactic presentations, panel discussions, and break-out sessions.

Target Audience

This course will be of interest to physicians, surgeons, physician assistants, nurses, nurse practitioners, and other health care providers in the following specialties: cardiology, cardiovascular surgery, pediatric cardiology, internal medicine, genetics, and genetic counseling.

Which would you prefer, accessibility to your medical record or more privacy of your medical record? and why?

Dr. Brian Goldman Emergency physician at Mount Sinai Hospital and Host of CBC Radio One's White Coat, Black Art will be discussing this issue on his next show.

You can follow Dr. Goldman on twitter:!/WCBADoctorBrian

I recently posted this question to facebook, here is one response:

"good topic to discuss - I'd prefer accessibility - the hospital I work for automatically sends copies of all reports and diagnostics to their patients - I wished all would."

I have to agree, as a patient I feel it is vital to have my medical records available to all medical professionals who could potentially need them for my care.

My experience as a past ER nurse, is that not every emergency room physician thinks that it is necessary. Some believe that they would not treat an emergency any different, that knowing your medical background does not change an emergent situation. What are your thoughts? Feedback is welcome here :)

Sunday, October 17, 2010

Johnnie Tuitel if I were a passenger on a flight with you, I would assist you if there was an emergency, just like I would any other person on that flight.

Dear Mr. Tuitel,

I wanted you to know that I am truly sorry to hear U.S. Airways has treated you so unfairly. I can't imagine what it is like having your "physical state" determined by flight crew. A wheelchair should not define a person and their potential to help themselves. I hope you can find something positive out of this terrible experience. I want you to know that if I was on a flight with you, and there was an emergency, I would assist you like I would any other person on that flight. And though we have never met I have a feeling you would do the same for me.


Saturday, October 16, 2010

Fibromuscular Dysplasia by Kari Ulrich, RN

Published in Winter 2009 New York State Association of School Nurses "The Communicator"

Fibromuscular Dysplasia
by Kari Ulrich, RN

A child comes into the nurse’s office complaining that her tummy hurts; she is tired and has a headache. The teacher and her parents have noticed she is not eating that well. As a school nurse you hear these symptoms frequently. In some children, however, these symp- toms are more than the typical stomachache. Such was the case with Jordan, who presented with the above complaints and was found to have a blood pressure of 290/150 mmHg. Jordan has a disease called Fibromuscular Dysplasia, or FMD. Looking back at Jordan’s symptoms, would your nursing assessment have included a blood pressure check along with taking her temperature?

Fibromuscular Dysplasia is a non-atherosclerotic, non-inflam- matory disease that usually affects medium sized arteries. Although many physicians consider FMD to be rare, it is most likely overlooked or misdiagnosed. Fibromuscular dysplasia typically presents with hypertension and on physical examination auscultation may reveal a bruit. FMD typically involves the renal and carotid arteries, although it can be present in most other vascular beds.

Three histological types of FMD are recognized and are character- ized by which layer of the artery is predominately affected:

•Medial fibroplasia: is characterized by its classic “string of beads” appearance which represents the most common type of medial dysplasia

•Intimal fibroplasia: Most common form found in children appears as a concentric band or a long smooth narrowing

•Adventitial fibroplasia: Rare, accounts for less than 1% of cases

Renal and mesenteric involvement may be more common in children than in adults. Taking a few extra minutes to assess a child’s vital signs including a blood pressure check could make an impact on finding this disease. Depending on which arterial bed is involved will depend on what symptoms if any a person will present with. Persons with FMD of the carotid arteries may present with dizziness, visual problems, tinnitus, neck pain, headaches, TIA or stroke. Persons where FMD affects the mesenteric arteries may experience nausea and vomiting that can lead to dehydration, abdominal pain and unintentional weight loss. FMD in the limbs may cause circulatory symptoms such as cold hands and feet, and pain with movement. FMD of the renal arteries may present with hypertension even at a young age. There can be more than one artery involved with FMD.

The etiology of FMD is unknown. Several theories have been suggested as a cause of FMD such as genetic, environmental, hormonal and mechanical. The disease is more commonly seen in young women but it can affect men, children and in rare case infants. There are a few connective tissue disorders that may be associated with FMD, such as Ehlers-Danlos Type (IV) syndrome and Marfan syndrome.

The “Gold-Standard” for diagnosing FMD is by angiography. The appearance of the “string of beads” is most commonly found in young adult women. The “string of beads” appearance is caused by abnormal cell development of the arterial wall in which the cel- lular tissue becomes narrowed and dilated. Other diagnostic tests include ultrasound, MRI, MRA, and 3D CTA. Consideration must be made if using contrast materials in someone who has impaired renal function. If carotid artery FMD is present a MRA is warranted to rule out an aneurysm. When obtaining an ultrasound of the carotid arteries it is important that the technician be familiar with the disease. FMD of the carotids can be missed if the technician does not look high enough toward the base of the skull to view the distal carotid arteries.

Unfortunately there is no cure for FMD. At this time there is no established protocol for treatment of FMD. Treatment depends on which vascular bed is affected with FMD. Good control of blood pressure can usually be achieved by using antihypertensive medica- tions. Some patients will need several medications to keep their blood pressure under control to prevent further damage to the kidney and loss of kidney function. Efforts to improve the blood flow to a severely stenosed artery are made by performing angioplasty otherwise known as PTA (percutaneous transluminal angioplasty). If angioplasty fails other options may include stenting and bypass, although these options are not usually recommended as primary treatment. Preventing an event such as a stroke or dissection from occurring is a key factor in this disease. Patients should be placed on daily aspirin for the anti- platelet effect; also blood thinners such as Coumadin maybe required. All treatment options should be discussed with the patient’s physician. If an aneurysm is present careful monitoring must be established and if needed coiling or clipping of the aneurysm may be done.

It is important for patients to work with their physicians to decrease other risk factors.
Thanks to the efforts of the Fibromuscular Dysplasia Society of America this disease has gained the attention of the medical community. Currently, FMDSA is working toward establishing an International Patient Registry. In June 2008 FMDSA held its first conference where patients and doctors came together to bring aware- ness and education to this disease. Both the American and National Stroke Association recognize FMD as a cause of stroke. FMD is listed on The National Organization of Rare Diseases.

Your assessment skills as a school nurse can play a critical role in the health care of a child with this disease and prevention of many other diseases. As nurses we must not minimize the important role of blood pressure screening as a tool we can easily utilize. Often, elevated blood pressure can be asymptomatic. Blood Pressure screen- ings in school age children can make an impact in disease prevention. FMD can strike young women, men and children and when left undiagnosed or mistreated it may be critical causing strokes, arterial dissections, loss of kidney function and sometimes death. Educating health care professionals is a start in preventing adverse outcomes in both children and adults with FMD. At a time when funding for school nurses is not a priority, and staff to student ratio’s are high, what seems to be a simple task of taking a blood pressure can be a challenge. With the help of School Nurses across the nation together we can make an impact on children’s health.

For more information on FMD and FMDSA please visit our web site at or write to us at FMDSA, 20325 Center Ridge Road, Suite 620 Rocky River, Ohio 44116. Membership to FMDSA is free.

Kari Ulrich is a Registered Nurse with both Pediatric and Adult Emergency Room experience; she is a FMD patient.

Content Reviewed by
Kevin E. Meyers, MD Pediatric Nephologist Assistant Professor of Pediatrics The Children’s Hospital of Philadelphia and University
of Pennsylvania Philadelphia, PA

Begelman, Susan M. “FMDSA Frequently Asked Questions.” FMDSA. 2 Aug. 2004. Staff Physician, the Cleveland Clinic Foundation. .
Meyers, Kevin E. C., and Neha Sharma Ba Iv. “Fibromuscular Dysplasia in Children and Adolescents.” Cath Lab Digest 15 (2007): 6+.
Olin, Jeffery W. Recognizing and Managing Fibromuscular Dysplasia. Medical Grand Rounds, Apr. 2007, CLEVELAND CLINIC. Cleveland, Ohio: CLEVELAND CLINIC JOURNAL OF MEDICINE VOLUME 74 • NUMBER 4, 2007.

Friday, October 15, 2010

Mayo Clinic Study on Brain Aneurysms

In 2007 I was diagnosed with Carotid FMD.
7 – 50% of patients with extra- cranial cerebrovascular FMD have an associated intra- cranial aneurysm (Begelman SM, Olin JW. Fibromuscular dysplasia. Curr Opin Rheumatol 2000; 12:41 – 47.)
I was fortunate enough to have a doctor familiar with Carotid FMD, and it was discovered I have 2 small aneurysms of my M1 branch.

Advisory Board for the Mayo Clinic Center for Health Care Social Media

I recently applied for a volunteer position for the advisory board at Mayo Clinic Center for Social Media. What an amazing experience it has been so far. I have learned so much from the process of applying to the getting use to the idea of "self promotion" through social media. I have learned quickly what wonderful connections can be made through social media, along with an unlimited amount of resources available at your fingertips. I want to thank everyone for their support and kind comments.

I encourage everyone to visit Mayo Clinic Center for Social Meeting.