Social SecurityDisability Benefits for Fibromuscular Dysplasia

Guest Blogger: Ram Meyyappan

 Senior Editor and writer for Social Security Disability Help

Social Security Disability Benefits for Fibromuscular Dysplasia

If you are suffering from fibromuscular dysplasia, the condition may have left you unable to work. Without the ability to work, you are left without an income and insurance. The lack of income and mounting medical bills can quickly spiral out of control. Fortunately, in many cases, Social Security Disability benefits can help. 

Qualifying for Social Security Disability Benefits with Fibromuscular Dysplasia

When you apply for Social Security Disability benefits, the Social Security Administration (SSA) will compare your condition to a listing of conditions known as the Social Security Blue Book (http://www.ssa.gov/disability/professionals/bluebook/). The Blue Book contains a listing of all of the conditions that could possibly qualify an individual for Social Security Disability benefits, along with the criteria that must be met in order to be approved for benefits under each listing.

Unfortunately fibromuscular dysplasia is not listed in the SSA's Blue Book. If you have an associated condition that is listed in the Blue Book, however, such as aneurysms or dissections, you may be able to qualify under those Blue Book listings. 

For those who are suffering from aneurysms, you could apply for benefits under Section 4.10 of the Blue Book. According to this listing, in order to qualify for benefits you must be able to prove that:

• You suffer from an aneurysm of aorta or major branches due to any cause
• The aneurysm has been demonstrated by medically acceptable imaging
• The aneurysm is with dissection and not controlled by prescribed treatment

If you do not have any conditions that are listed in the Blue Book, you may still qualify for Social Security Disability benefits under a vocational allowance. In order to do this, you must prove to the SSA that you are unable to perform any type of work activity that you are qualified for due to your disabling condition. For example, if you have only worked in a warehouse and your doctor has told you that you must avoid lifting and strenuous activity, which can strain the arteries, a written statement from your treating physician stating that you cannot continue to work due to your limitations may help support your Social Security Disability claim. This will affect the SSA's residual functional capacity assessment of your condition.

Technical Requirements for Social Security Disability Benefits

In addition to proving that you are disabled according to the SSA's guidelines, you must also meet technical requirements to be eligible for Social Security Disability benefits. There are two different disability programs available from the SSA and both have their own technical requirements.

Qualifying for SSDI

In order to qualify for Social Security Disability Insurance (SSDI), you must have earned enough work credits through your previous work history. If you are age 31 or older, you must have 20 work credits in order to qualify for SSDI benefits. If you are under the age of 31, you must have worked half of the years since turning age 21. For example, if you are 27, you must have worked for three of the past six years to qualify for SSDI benefits.

Qualifying for SSI

If you do not have enough work credits to qualify for SSDI benefits, you may be able to qualify for SSI (Supplemental Security Income) benefits. SSI is a needs-based program. It is intended for low-income individuals and families. In order to qualify for SSI benefits, your monthly income cannot exceed $710 as an individual or $1,060 as a couple. Your household assets must also not exceed $2,000 as an individual or $3,000 as a couple. 

Applying for Social Security Disability Benefits

You can apply for Social Security Disability benefits online (http://www.socialsecurity.gov/pgm/disability.htm) or in person at your local Social Security office. If you are applying in person, make sure that you bring copies of medical records that prove that your condition meets a Blue Book listing, as mentioned above, or that you are unable to perform any type of work activity whatsoever. You will also be asked to fill out a number of forms. Make sure you fill out each form in its entirety and answer the questions with as much detail as possible so the SSA understands how your condition prevents you from performing any type of work activity. If you are applying online, you will be provided with a cover sheet that will allow you to fax your medical documentation in. You will receive a decision regarding your disability claim within three to six months of the date of your application. 

Article by Ram Meyyappan
Social Security Disability Help
www.disability-benefits-help.org/blog

COUNTRY MUSIC SUPERSTARS TRAILER CHOIR, CHUCK WICKS AND KEITH ANDERSON TEAM UP WITH THE JOE NIEKRO FOUNDATION AND GO TO BAT FOR ANEURYSM RESEARCH

Country Music Superstars Trailer Choir, Chuck Wicks and Keith Anderson have teamed up with The Joe Niekro Foundation for a weekend of festivities in Houston, TX, April 27th and 28th. It’s all in celebration of the 3rd Annual Knuckle Ball...A Pitch for Life, with proceeds benefitting brain aneurysm research, treatment and education.

Friday, April 27th will kick things off at Dan Electro’s Guitar Bar with a special acoustic, in the round performance, beginning at 8P. Patrons will hear hits like Rockin’ the Beer Gutt and Shakin’ that Tailgate from Trailer Choir, Stealing Cinderella, All I Ever Wanted and Old School from Chuck Wicks, and Every Time I Hear Your Name, Pickin’ Wildflowers and Lost In This Moment from Keith Anderson. These hits plus many more will fill the stage and make country music memories, while attendees experience an up close and personal view of these country megastars. The festivities continue at Minute Maid Park on Saturday, April 28th as the entertainers will be joined by athletes from across the country at the 3rd Annual Knuckle Ball...A Pitch for Life, as they pay tribute to the beloved 13-year Houston Astros All-Star, Joe Niekro. At the peak of his Major League Baseball pitching career, Joe Niekro was famous for his command of the knuckleball, a baseball pitch with an erratic, unpredictable motion. Like a knuckleball, Niekro’s life took an unpredictable path on October 27, 2006, when he died suddenly from a ruptured brain aneurysm.
Niekro served 22 years in the Major Leagues, 13 of those with the Houston Astros. He became the team’s first 20- game winner, and remains the all-time leader in wins among Astros pitchers. Teaming up with his brother, Hall of Famer Phil Niekro, the two combined for 539 wins over their respective careers making them the most successful brother combination in Major League history.
In honor of his memory, daughter Natalie Niekro created The Joe Niekro Foundation, with a mission to raise funds for brain aneurysm research, treatment and help bring public awareness to this devastating condition affecting as many as 1 in 15 people.
A number of Astros players, along with former MLB, NFL and NBA Stars, will be on hand at the black-tie gala, featuring a reception, formal dinner, silent and live auction (for a list of previous attendees, click here). Joe’s brother and Hall of Fame pitcher, Phil Niekro will serve as the evening’s Master of Ceremonies, with a special presentation of The 2012 Joe Niekro Humanitarian Award to Haynes and Boone, LLP Partner and current Chairman of the Board of the Harris County - Houston Sports Authority, J. Kent Friedman.
We invite you to join us for a weekend of fun as we raise money for a condition that is killing thousands every year. For tickets and more information on both events and The Joe Niekro Foundation, visit www.joeniekrofoundation.org/knuckleball.

WHEN: April 27th – 8P – Country Music Concert
Dan Electro’s Guitar Bar, 1031 E. 24th St. Houston, TX 77009
Tickets: $75


April 28th – 6:36P – Knuckle Ball...A Pitch for Life (Joe Niekro’s #36 symbolizes the start time) Minute Maid Park, 501 Crawford Street, Houston, Texas 77002
Tickets: Individual Tickets start at $336, with table sponsorships ranging from $5,036-$25,036.

Chuck Wicks

Trailer Choir

FMD have you seen me?

Brain & Tina Sapp

Guest Blog: A unique perspective about the importance of vascular imaging from a Vascular Technologist and a husband of a FMD patient. 
By Brian Sapp, Lead Vascular Technologist and PACS Administrator at Piedmont Medical Center

Are you finding FMD at your facility? If you are not, chances are that you may not be looking for it. FMD or fibromuscular Dysplasia is a disease that effects primarily the renal arteries, carotid arteries, mesenteric, and iliac arteries in young adults.

 The disease process is most common in women who present with controlled or uncontrolled HTN, TIA, or CVA between the ages of 30-55. The mean age is 36. FMD is not an arteritis and has no known etiology, however it is believed to be triggered by hormones (women and age). FMD usually is left side dominant.

On ultrasound usually you will see laminar flow at the origin of the renal or internal carotid artery then abrupt bruit with increased diastolic velocities in the mid or distal renal/internal carotid artery. On arteriogram a string of beads is the classic sign of FMD. In severe cases the beading is seen on ultrasound. FMD is often overlooked in the carotid artery due to the lack of b-mode plaque visualization and sampling is not performed far enough distally to see the turbulence. Being aware of the patients history and age should key you in on FMD.

Three main things to let you know to look further are :

• Young female with bruit.

• On HTN medication.

• Elevated diastolic velocities bilaterally without plaque formation.

All of these should point to the technologist to look as far distally as possible. FMD is treated by angioplasty and patients generally have very good outcomes. Dissection of the carotid artery and aneurysms are ramifications of undetected FMD.

Tina's story:

Eight years ago I started a job with the Vascular Institute of Georgia, a large vascular surgery practice in Atlanta.  Tina was the manager and lead technologist.  She had taken blood pressure medicine for a short period the year before during a personal time of stress.  Working with such a large group of technologists the subject came up one day, I of course asked to scan her renal arteries.  She stated that they had already been looked at earlier by another tech and that they were fine.

I don't take no for an answer and insisted to take a peek.  Her left renal artery had an unusual look to it had very laminar flow proximally and then took a sharp turn when her diaphragm was relaxed. Her velocities were elevated with her diaphragm relaxed and reduced when she took a breath in and the artery appeared to straighten.  I told her it was FMD she said it was a kink and that the velocities were still well under a 3.5 ratio. When Tina said it was due to a kink, well that was the end of it (if you have ever met her she is indestructible and tough as nails).

The story moves to 18 months later, I have moved to my current employer and we became involved.  Tina had been placed on Diovan and her BP was well controlled.  One evening we went to the local fair and the kids asked her to ride the scorpion, well she got stung.  Upon leaving the ride she looked gray, was sweating profusely and became very nauseated.  Needless to say she has never ridden another ride at the fair, thankfully she did survive.  I immediately asked to scan her renal arteries as we had a trip to Disney planned in a couple of months.  Her left renal artery had developed a full time bruit and the end diastolic velocity was very high, even though the systolic was only moderately high (borderline 3.5).  She had also developed an increased color bruit in the distal right renal artery.

At age 37 the diagnosis of FMD was made and confirmed under arteriogram, she had successful angioplasty and is currently being monitored every six months and is on Cozaar.  Tina fit all of the parameters as far as age, being of the female sex, having a bruit on the left renal artery.  However being a vascular tech herself, she didn't want to accept her condition initially because of her ability to control her blood pressure with one medication.  This is the most important facet to her story.  Anyone who is female and develops a need for blood pressure and fits the age group in my opinion should have a renal artery duplex. 

About Brian:  I have been performing Vascular Ultrasound for 15 years.  I am a very busy person and currently hold several hats. I am a full time employee of Piedmont Physician Group as the administrator of the radiology PACS system and Non-invasive vascular laboratory. I am a working manager, meaning I scan patients every day. I am also a consultant for both CareFusion and Registered Vascular Solutions Inc; a company I founded 5 years ago.  I am married to Tina Sapp who is the manager of Saint Josephs outpatient vascular lab in Atlanta Georgia and a recent graduate of the University of West Florida with a Masters in Health care Administration. Her laboratories produce approximately 14000 high quality studies a year. We have three children together ages 16, 13 and 8. We both are very passionate about vascular testing and vascular education.

Follow Brian:
Blog
Linkedin
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Twitter
4mylegs.com

Experienced from both sides of the bed

The November 2011 Issue of Readers Digest reads in big, bold print  “50 Secrets Nurses Won’t Tell You”

Articles like this create fear and mistrust in the patient community.

The front of the article states “Doctors are clueless about what really happens in the beds, rooms and halls of our hospital” Really? In my experience physicians are very well aware of what is happening in the bed. I had just had a major vascular surgery in 2009, when I developed chest pain in the ICU.  Who was there at the side of my bed reading my EKG and ordering the Nitro Drip? The ICU nurse? No the Intensivist.  My nurse was amazing. She monitored my pain, adjusted the drip while monitoring my vital signs. It was a team effort.

The next time I am admitted to the hospital should I be suspicious of my vascular surgeon who held my hand and informed me how my surgery went? He drew pictures so I understood and patiently listened to me while I asked questions about my prognosis. What about the fact that the surgeon listened to my suggestions on what I thought could make my recovery successful. Together as a team we made decisions about my discharge. My surgery and all that accompanied it was a positive experience because participatory medicine was taking place.

The Readers Digest states that they “...went to the experts.” Now don’t get me wrong, I have been a Registered Nurse for almost 2 decades, and many nurses are exceptionally intelligent, and dedicated. But I disagree with the light Readers Digest put nurses in. We are part of the team, there are no experts. The doctor nurse relationship is not “them against us” like this article makes it out to be. I am member of The Society of Participatory Medicine who’s mission is to bring together e-patients and health care professionals. We can do better both as health care providers and patients, telling “secrets” is not the answer.

Personally I found a few of the "secrets" offensive and not true of the nursing profession. The article “50 Secrets Nurses Won’t Tell You” is a small representation of nurses, many who are professional and work with values and a code of ethics.
Whatever it takes to sell a magazine right?

I could go delve deeper into this article but I suggest you read the article judge for yourself, let me know your thoughts.

Kari Ulrich,  FMD e-patient, RN
Experienced from both sides of the bed

Getting ready for Surgery

Join FMDChat on Facebook For a Special Chat like no other!

We are doing something a little different in our patient community, and I wanted to share it with all of you.

FMDChat is holding a facebook chat, but instead of doctors telling patients about Fibromuscular Dysplasia (FMD), we are giving patients the opportunity to educate physicians what it is like living with FMD, what our challenges are in health care.

Please join us in our conversation, I hope this is the first of many more to come. I am grateful to the Dr. Sevilla and my husband, Dr. Ulrich for taking this leap of faith and making a difference in our patient community.

Thursday, November 10th from 7-7:30pm CST

Patient voices are an under-utilized resource.

FMDChat wants to raise awareness in the Family Practice Community. Join us and our special guests:

Dr. Mike Sevilla & Dr. Mike Ulrich

As we open lines of communication and educate physicians by communicating through the patient perspective.

This is an opportunity for patients to tell Family Practice Physicians what we need from them!
About our Guests:

Mike Sevilla, MD (@DrMikeSevilla on Twitter) - Family Physician and Social Media Enthusiast since 2005. Topics of his blog and podcast include commentary on current medicine and social media news. To learn more about Dr. Sevilla visit: http://www.familymedicinerocks.com/

Mike Sevilla, MD

Mike Ulrich, MD - Family Physician for Mayo Clinic Health Systems in Albert Lea in Minnesota. Dr. Ulrich is the Division Chair for Family Practice and Medical Director of Emergency Medicine for Mayo Health Systems in Albert Lea, Minnesota. He serves on the Medical Advisory Board for The Joe Niekro Foundation.  He is also husband to FMD patient Kari Ulrich and has a unique perspective on coping with FMD.

Mike Ulrich, MD

Chat Moderated By: Sarah E. Kucharski and Kari Ulrich

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

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

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

100 Days of Giving: Aneurysms, Fibromuscular Dysplasia & Fuzzy Friends

There is a great website that allows you to create your own foundation and give to your favorite charities. GiveBack tracks all your charity donations for tax purposes. I do find that at the end of the year I am shuffling through drawers etc trying to find tax receipts- (Yes, it would be easy to keep them in one file- but when you have some receipts coming through the mail, some on line, some in person- it is much easier to stuff them in the junk drawer and deal with them later) What I really like about this program is that is allows you to give by shopping on line, a portion of the sales goes to your foundation and you decide where and how the money is used. Take a look and see if GiveBack is right for you. Join me in the 100 days of giving- it is easy to do. Click on link below and get started!
https://www.giveback.org/onehundreddays.aspx?refid=38535

Today I gave to Mayo Clinic for Fibromuscular Dysplasia Research, Education and Support. Give to your local hospitals, give in your community.

My 100 days of giving charities have included:

The Joe Niekro Foundation for Brain Aneurysm Research
Mount Sinai Medical Center for Fibromuscular Dysplasia Education
Vascular Disease Foundation
Society of Vascular Medicine

and my local favorite: The Freeborn County Humane Society

My Beagle- Basset Odie- adopted from the Freeborn County Humane Society

March 3, 2011 Transcript from Twitter FMDChat

Midwest Women's Vascular Support Group

Twitter FMDChat is Tonight from 7pm-8pm CST! FMDChat is a Twitter Community to open communication and expand knowledge of FMD. #FMDchat

We will break down our chat into twitter questions- T1,T2, T3 so please reply according to the the tweet question. #FMDchat

FMDChat
FMDChat is open to the public and will cover topics related to Fibromuscular Dysplasia. #FMDchat

mdulrich Michael Ulrich
test #fmdchat

jenniferm7373 Jennifer Moreen
test #FMDChat

FMDChat
Welcome to FMDChat FMDChat is a Twitter Community to open communication and expand knowledge of FMD. #FMDchat

FMDChat
Our Chat will start in a moment, please take a moment to introduce yourself remember to use #FMDChat

FMDGirl Kari Ulrich
Kari here- FMD pt- carotids, renal, femoral and Mals! Looking forward to meeting you all! #FMDChat

FMDChat FMDChat
Welcome Roxy Girl! #FMDChat

jenniferm7373 Jennifer Moreen
I'm Jennifer Moreen in Minnesota, have FMD in coronary arteries, corotids, vertebrals, illiacs and right renal. #FMDChat

mdulrich Michael Ulrich
Michael Ulrich MD, Family Practice doc here for FMD chat. #fmdchat

FMDChat FMDChat
I want to remind everyone Brain Aneurysm Awareness week is March 14-20, 2011 http://joeniekrofoundation.com/ #FMDchat

FMDChat FMDChat
Welcome Jennifer! #FMDchat

FMDChat FMDChat
T1- How has FMD changed your life? #FMDchat

FMDGirl Kari Ulrich
T1- I have a lot of pajama days!! #FMDchat

mdulrich Michael Ulrich
T1- FMD has changed life significantly. Learned there are good days / bad days. #fmdchat

FMDChat FMDChat
I get it roxy! I think it has invaded every vascular bed in my body! #fmdchat

jenniferm7373 Jennifer Moreen
My life has changed significantly -- lots of meds, lower energy, a new "normal" that is hard to get used to. #fmdchat

FMDGirl Kari Ulrich
I am on 4 blood pressure meds and my BP still is not in good control, very fatigued- biggest complaint I have #FMDChat

FMDGirl Kari Ulrich
Jennifer and Michael- how much do you think the side effect of BP meds contribute to fatigue vs the disease? #FMDChat

jenniferm7373 Jennifer Moreen
That's a good questions. I think meds are a big factor - the b.p. meds slow everything down. The disease itself? Not sure.. #fmdchat

FMDChat FMDChat
@RoxyGirl1013 I understand be scared being by yourself! #FMDChat

mdulrich Michael Ulrich
I think that BP meds can contribute to fatigue in many ways. But every person with FMD is unique. #fmdchat

jenniferm7373 Jennifer Moreen
For me a good day is: no headache, enough energy to work and get things done and stay up until 10 p.m. #fmdchat

FMDChat FMDChat
T2- What do you want Doctors to know about your disease? #FMDchat

jenniferm7373 Jennifer Moreen
Not sure if this is the right forum, but Michael, I'm curious of your thoughts on adding CoQ10 for energy and cell health. Risks? #fmdchat

FMDGirl Kari Ulrich
I would like for docs to understand FMD is a VASCULAR DISEASE, we need close monitoring, we need a team of physicians #FMDChat

mdulrich Michael Ulrich
My understanding is that CoQ10 is a natural substance produced in the body. Statins deplete it. Thumbs up! #fmdchat

mdulrich Michael Ulrich
I also think that a good omega 3 fish oil is important. #fmdchat

mdulrich Michael Ulrich
Agree Kari - patients need a doc who knows FMD and can follow them regularly. #fmdchat

jenniferm7373 Jennifer Moreen
Good to know, thanks! I've been told by my cardiologist and other docs to take fish oil supplements. Very helpful. #fmdchat

FMDChat FMDChat
@RoxyGirl1013 FMD patients are very knowledgeable in their disease, many docs learn from the info we bring them to the office #FMDChat

CuteNicuNurse Jen W.
Very!! :)RT @mdulrich: I also think that a good omega 3 fish oil is important. #fmdchat

FMDChat FMDChat
T3- What helps you get through a day with FMD? #FMDchat

FMDChat FMDChat
Welcome @CuteNicuNurse- we are chatting about FMD a vascular disease- just curious have your heard of it? #FMDchat

FMDChat FMDChat
@CuteNicuNurse FMD can affect infants too! It can lead to stroke, kidney problems- depending on the vascular bed #FMDChat #FMDchat

mdulrich Michael Ulrich
I also think diet important - specifically diet low in too many "quick carbs". #fmdchat

PracticalWisdom Lisa Fields
Sorry for the interruption but wanted to give my Blessings for your Chat tonight. #fmdchat

PracticalWisdom Lisa Fields
I'm Lisa Curious Adult Education Scholar who morphs the ho-hum into compelling. Speaker, Trainer, Presentation Designer, Rascal. #fmdchat

jenniferm7373 Jennifer Moreen
Michael, I agree 100% about diet, but curious why specifically quick carbs. #fmdchat

mdulrich Michael Ulrich
In terms of diet - I am speaking of general cardiovascular health - not just FMD! #fmdchat

FMDChat FMDChat
Thank you @ParticalWisdom for joining us! #FMDchat

FMDChat FMDChat
I disagree with the quick carb having anything to do with FMD #FMDchat

jenniferm7373 Jennifer Moreen
Got it. So true because quick carbs drain our energy overall, which is the last thing we need! #fmdchat

mdulrich Michael Ulrich
A diet balance of too many quick carbs leads to high insulin which is bad - need to avoid insulin spikes. #fmdchat

FMDChat FMDChat
Jennifer that makes sense to me. #FMDChat

jenniferm7373 Jennifer Moreen
I'm curious if anyone feels that FMD has had any positive influence on their life... any new, good things to come of it? #fmdchat

mdulrich Michael Ulrich
Too many insulin spikes could lead to insulin resistance and type 2 diabetes which can increase to heart disease risk - #fmdchat

mdulrich Michael Ulrich
All FMDers need to minimize ALL risks for heart diease. #fmdchat

FMDChat FMDChat
You are right @cuteNICUNurse, very rare in infants, I am curious if SIDS could be connected to FMD in some cases #FMDchat

FMDChat FMDChat
@CuteNicuNurse FMD is not commonly looked for on autopsy #FMDchat

PracticalWisdom Lisa Fields
@jenniferm7373: That's a great Question. I'd also like to know if there is any new research coming out. Where do you find hope. #fmdchat

FMDChat FMDChat
Jennifer- positive influence- YES! I am much more proactive in my health and respect my body much more #FMDChat

jenniferm7373 Jennifer Moreen
@PracticalWisdom Many of us are in various studies, not much is known yet about FMD but we're trying to change that #fmdchat

FMDChat FMDChat
Great Question @PracticalWisdom! http://bit.ly/fxZon7 #MCCSM #FMDChat

PracticalWisdom Lisa Fields
@jenniferm7373 I'm impressed that you and @FMDGirl are working so hard. We must get the word out I"m impressed with the efforts. #fmdchat

mdulrich Michael Ulrich
one big source of research will be the FMD patient registry through FMDSA. #fmdchat

FMDChat FMDChat
FMD Research: http://bit.ly/e9jMLO - More money is needed for research #FMDchat

mdulrich Michael Ulrich
much of the research has been driven by Dr Jeff Olin and other dedicated Vascular docs. #fmdchat

FMDChat FMDChat
@PracticalWisdom you have been a great strength and resource, I am grateful for your wisdom ;) #FMDChat  

FMDChat FMDChat
T4- How can FMD awareness be spread more quickly and accurately? #FMDchat

PracticalWisdom Lisa Fields
Looks like an Impressive MD: Dr. Jeff Olin-http://www.mountsinai.org/profiles/jeffrey-w-olin #fmdchat

jenniferm7373 Jennifer Moreen
Thank you, PracticalWisdom. I'm new to twitter and don't know how to reply to you w/the @ sign! LOL #fmdchat

FMDChat FMDChat
Roxy asks: Michael, curious to know your opinion on the correlation between FMD and adhesions, if any.#FMDchat

mdulrich Michael Ulrich
Patients also benefit from an "FMD Clinic" model where they can be followed. Cleveland Clinic with Dr Heather Gornik is example. #fmdchat

PracticalWisdom Lisa Fields
@jenniferm7373: My pleasure. You are doing great. My Big secret is TweetChat. There are columns that give quick choices. #fmdchat

FMDChat FMDChat
Roxy: Don't forget to take the FMD patient retreat survey! http://www.surveymonkey.com/s/YKBHN2X #FMDchat  

mdulrich Michael Ulrich
re question about adhesions and fmd - I agree there is correlation and likely related to connective tissue component. #fmdchat

PracticalWisdom Lisa Fields
RT @mdulrich: Pt's benefit from an "FMD Clinic" model. where they can b followed. Cleveland Clinic Dr Heather Gornik is example. #fmdchat

FMDChat FMDChat
@PracticalWisdom I am still learning tweetchat- we need to have a phone conference Lisa :) #FMDchat

mdulrich Michael Ulrich
my question is how many out there have fmd and are asymptomatic? #fmdchat

FMDChat FMDChat
My dream is that Mayo Clinic Rochester get an "FMD Clinic" it is so needed! We need a team of docs #MCCSM #FMDChat  

mdulrich Michael Ulrich
to what extent does fmd "spread" in a patient - and what are the triggers? #fmdchat

PracticalWisdom Lisa Fields
What R classic symptoms might be missed?RT @mdulrich: my question is how many out there have fmd and are asymptomatic? #fmdchat

FMDChat FMDChat
We are about out of time- I want to thank each of you for participating in our first FMD Chat! #FMDchat

jenniferm7373 Jennifer Moreen
Good question about asymptomatic people. There are likely very many. Many of us were basically symptom free until a crisis hit. #fmdchat

mdulrich Michael Ulrich
classic symptoms depend on where FMD is. In carotids it is the "whoosh" sound with a bruit. #fmdchat

FMDChat FMDChat
Thank you so much for joining us on FMDChat. Please check back for our next FMDChat date and time! #FMDchat

FMDChat FMDChat
Questions about FMDChat can be directed to mwva@me.com #FMDchat

mdulrich Michael Ulrich
other symptoms can be secondary related to hypertension and other effects of the disease - fatigue, headaches, etc.. #fmdchat

FMDChat FMDChat
Don't Forget! Brain Aneurysm Awareness week is March 14-20, 2011 http://joeniekrofoundation.com/ #FMDchat

mdulrich Michael Ulrich
of course, fmd can lead to strokes, heart attacks. #fmdchat

PracticalWisdom Lisa Fields
Thank you so much for the information and chat tonight. How exciting to have your first FMDChat. Congrats! #fmdchat

FMDChat FMDChat
Goodnight everyone! Thank you!! #FMDchat

PracticalWisdom Lisa Fields
Good night @FMDGirl @mdulrich @Jennifer7373 http://www.youtube.com/watch?v=cp7_u0kcQRo #fmdchat

PracticalWisdom Lisa Fields
@FMDChat: Congrats on First #FMDchat. Proud U R my Friend/Teacher. http://www.youtube.com/watch?v=axLRUszuu9I

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

www.mwva.org