Classifying Fibromuscular Dyplasia

There is a group of patients and advocates who want to understand the how FMD is classified in every day terms. Please not this is a work in progress and I would love feedback if there is any aspect that could be explained more easily. Thanks- Kari

First lets look at the layers of the artery, this will help you understand the classification system of FMD. As you can see there are several layers that make up an artery. (Figure 1)

Figure 1

When we classify FMD we are concerned with the following main layers: (Figure 2)
Tunica means layer of tissue.

Figure 2

1. Tunica Adventitia (outer layer)
2. Tunica Media (middle layer)
3. Tunica Intima (inner layer)



There are several types of FMD (fibroplasia) and if we include rarer types there are a total 5 pathological classifications of FMD (fibroplasia).  I have put in bold ones that we hear about most often. Please remember you can have more than one type and that many types can only be confirmed by a pathology specimen.


1. Medial Fibroplasia: Charaterized by its classic “string of beads” appearance which represents the most common type of FMD. Frequency 75-80% Most Common

2. Perimedial Fibroplasia: beads are smaller in appearance Frequency 10-15%

3. Media hyperlasia- smooth stenosis (similar in appearance to intimal) Frequency 1-2%

4. Intimal Fibroplasia: Most common in children, and appears as a concentric band or a long smooth narrowing. Frequency: less than 10%

5. Adventitia Fibroplasia: Dense fibrous tissue that may extend into surrounding tissue (very rare) Frequency: less than 1 %


Resources:
Journal Compilation, World Stroke Organization International Journal of Stroke Vol 5, August 2010, 296-305
Figure 1 Photo Source: http://www.teachpe.com/anatomy/arteries.php
Figure 2 Photo source: http://blog.lib.umn.edu/trite001/studyinghumananatomyandphysiology/2008/02/name_the_layers_of_this_artery.html

How Scarey is FMD?

 A Halloween montage about FMD by survivor Carol Garrison

Make a video - it's fun, easy and free!
www.onetruemedia.com

To read more about Carol's Story CLICK HERE

5 Influential Patients in Social Media

Kelly Young, Kari Ulrich,Virna Elly at Mayo Clinic Social Media Summit 2011

There is a lot of talk about influential people in health care, many are lists of physicians, health care executives and organizations.  There is another group of that cannot be forgotten. Lets lead a discussion about influential patients. Here are some e-patients that have been most influential to me. Lets add on to this list! Let me know what e-patients are influencing you and why? What qualities makes a patient influential?

Kelly Young  Fighting Rheumatoid Arthritis with humor, wisdom and strength.

Twitter: @rawarrior  http://rawarrior.com/

Virna Elly  Fighting Diabetes with courage, intelligence and squirrels.

Twitter: @VirnaElly http://patientsperspective.org/about/

Laura Haywood-Cory  Fighting Heart Disease with compassion, empathy and determination.

Twitter @ncscadsurvivor  http://a-changeofheart.blogspot.com/

Melissa Travis Fighting Lupus with grace, education and whit.

Twitter: @DrSnit  http://drsnitwithlupus.blogspot.com/

Sarah E. Kucharski  Fighting Fibromuscular Dysplasia with honesty, integrity and wombats.

Twitter: @AfternoonNapper http://afternoonnapsociety.blogspot.com/

Mayo Clinic Social Media Summit: Kari Ulrich's Patient Panel Talk

The impact social media is making on rare disease, an e-patient perspective.

Participatory Medicine

During the Mayo Clinic Social Media Residency I had the opportunity to ask Mike Sevilla, MD what he thinks about Participatory Medicine. Here is what he had to say:

Mike Sevilla, MD

Thank you Dr. Sevilla!

I highly recommend every health care provider read:
Participatory Health Care: White Pages by Tom Ferguson, MD and the e-Patient Scholars

Social Media in Health Care is Human.

What I have learned from Mayo’s Social Media Summit

10:35 pm and I am just getting started on my homework assignment. I am happily exhausted from this past week. I know I have done something worthwhile because I have gone beyond my limit of comfort physically, emotionally and spiritually.

I came to the summit as a patient scholarship recipient. I was representing a group of remarkable people with a rare disease. This summit was not about me, but about every patient that has touched my life with his or her experience. I needed to learn how to communicate on behalf of those who cannot.

The summit has taught me more than the power of communication. I have learned that to me the definition of social media in health care is more than written word.  It is the passion of the human spirit to make a positive a productive difference. Social Media in Health Care is Human.

Among the twitter celebrities I found wisdom, humility, values and integrity. I found role models that will shape my communication in a way no other has.  I will continue my journey in social media with the ethics of @SeattleMamaDoc and @MeredithGould.  My words and language will contain integrity thanks to the wisdom of @westr, @subatomicdoc and @burgessct. I will always remember the impact I am making and the ROI of my engagement through the humor of @chrisboyer I will continue advocating with integrity thanks to the influence of @rawarrior, @EdBennett and @ePatientDave.

I will never underestimate the knowledge of an e-patient and those who have traveled a path similar to mine. Virna Elly, Jill Plevinsky, Jim Pantelas and Corey Daniel King your passion will always live in my heart, we are in this together and I know our accomplishments will be many because of the connections we have made.

Words cannot express my gratefulness to Mayo Clinic, Ragan Communications, the Mayo Clinic Social Advisory Board, Lee Aase and his team for this life changing opportunity. I look forward to growing old with you all, as the Cowan’s have shown us age and wisdom is a wonderful thing.