HAPPENING NOW: President Obama Live on Facebook

I would encourage everyone to participate in Facebook Live Townhall and ask our President any questions you have on the future of health care.

http://www.facebook.com/FacebookLive?ref=ts&sk=app_127337483972992

Click on Green button to ask question.

Ideas:

Why is it so difficult to get NIH funding for rare diseases- Fibromuscular Dysplasia?


As a person with a rare disease I am concerned about the future of health care and access to doctors that are experts in my disease. How are you going to ensure that people have access to quality health care?

Fibromuscular Dysplasia OMIM 135580

What is OMIM?

"OMIM is a comprehensive, authoritative, and timely compendium of human genes and genetic phenotypes. The full-text, referenced overviews in OMIM contain information on all known mendelian disorders and over 12,000 genes. OMIM focuses on the relationship between phenotype and genotype. It is updated daily, and the entries contain copious links to other genetics resources."

http://www.ncbi.nlm.nih.gov/omim

Did you know FMD has a OMIM Number?

135580

http://www.ncbi.nlm.nih.gov/omim/135580

Why would you want to know the OMIM of a disease? 

It is another way to look up information and articles. Remember an educated patient is an empowered patient. Understanding your disease leads to informed decision making regarding your health. 

Fibromuscular Dysplasia in Children

http://www.schoolnursenews.org/BackIssues/2009/0909/BloodPressureFeature.pdf

In September 2009 I wrote a letter to Deb Ilardi, RN, BSN, Clinical Editor of School Nurse News regarding the importance of monitoring blood pressure in children. Here it is 2011, and as the school year winds up here in the United States I am reminded again of the importance of detecting hypertension in children.

Dear School Nurses,

 I am writing to you not only as a nurse but also as a mother of school age children. I want to bring awareness to a disease called Fibromuscular Dysplaia. School Nurses can play an important role at discovering this disease in children, as elevated blood pressure is one of the symptoms.  Fibromuscular Dysplasia or commonly called FMD, is a disease that causes one or more arteries in the body to have abnormal cell development resulting in narrowing of the artery wall. The narrowing can cause a decrease in blood flow and results in damage to the organ that is supplied by that artery. The American Stroke Association now recognizes Fibromuscular Dysplasia as a cause of stroke.

I would like to share with you a child’s experience: Jordan has been sick most of her life. Jordan has  widespread Fibromuscular Dysplasia. The beading of her blood vessels decreases blood flow throughout the body and causes high blood pressure, which is how the condition was discovered five years ago, when Jordan was four years old. Her blood pressure hit 290/150 at that time.

Jordan has gone through angioplasty several times on her renal arteries. She is young, and her arteries haven't fully grown yet, so she will require additional angioplasties in the future. Jordan can go to school with her friends, but she often has problems when she doesn't eat and drink enough. She has been in and out of the hospital all her short life. Thankfully, Jordan and her family are able to share with us what she has gone through. For some children the diagnosis comes to late and the child has already lost the battle before the doctors figure out what they have.

Many young women have strokes, arterial dissections and sometimes death before being diagnosed. Patients are being sent home from emergency rooms because physicians are not familiar with this disease. This disease can strike young women, men and children and when left undiagnosed or mistreated it can be critical. FMD has recently been gaining attention in the medical community but still has a long way to go. With your help we can 
spread the word and possibly save lives. It is important to be 
diagnosed with FMD prior to any events (stroke, kidney damage, etc), 
as interventional procedures can benefit patients.

My goal is to have yearly blood pressure screening done on every child in every school district, and referral to an MD if needed. If we work together as a team we can make great strides in finding this disease and others that attack the vascular system. 


Kari Ulrich RN

Jordan

Fibromuscular Dysplasia: Is This Myocardial Infarction -Heart Attack with Jennifer Moreen Founder- MWVA

Please join us Wednesday April 13, 2011 at 6:00 PM EST 

Is This Myocardial Infarction -Heart Attack

 with 

Jennifer Moreen, Founder- MWVA

Jennifer Moreen shares her story with Dr. Evelyn Richardson on 

“The Doctors Radio Show”

The Doctors Radio Show brings Cutting Edge Medicine and Research from leading Physicians and other Health Professionals from around the world.

Evelyn Richardson received her PH.D in Health from 

Virginia Polytechnic Institute and State University

Click Here For More Information

Fighting Fibromuscular Dysplasia

Just got a phone call from South Africa today from Colleen Botha, Ashleigh's mom. Ashleigh was too ill to speak on skype today. I really missed hearing her giggly voice and seeing her warm smile.  Many of you have been following Ashleigh's story and progress, she struggles everyday with a progressive form of Fibromuscular Dysplasia (FMD). She has one more year left of high school- and currently is having a difficult time making it through an hour of what should be a seven hour school day for her. She continues to loose weight and battle daily with pain. Despite all that she has been through at such a young age, she has remains one of the most inspiring persons I know. Ashleigh was recently featured in the South Africa Sunday Times Health Magazine: http://www.healthytimes.co.za/

The Botha family has endured so much over the past few years, but continue to brave and strong no matter what obstacles they may face.

I am thankful that we live in an era of social media. I know the awareness of Fibromuscular Dysplasia, would not be were it is today without it. In the past 4 decades little has been written about this disease and research has been minimal. Social Media has made the rare world of FMD not so rare. We are able to send valuable life saving information in a matter of seconds. This has made a impact in Ashleigh's quality of life. If you have not had a chance to get to know this amazing girl and her journey with FMD please take a moment to visit her website: www.helphealashleigh.com

Midwest Women's Vascular Advocates April Meeting

MWVA invites you to our next support group meeting!

Saturday,  April 30, 2011

10:00 am - 3:00 pm

Mayo Clinic Health System: Albert Lea Medical Center
404 West Fountain Street
Albert Lea, MN  56007

Meeting Room 20


“This ISN’T What I Signed Up For”

Guest Speakers:
Mark Patrick, Licensed Marriage and Family Therapist
Polly Patrick, High School Teacher, Teacher Instructional Coach Inspirational Speaker


Come share your experience with others. A light lunch will be provided.
Meeting FREE of Charge.


Please Register by April 23, 2011: email us with the number attending and updated contact info:
mwva@me.com



MWVA will be collecting new and gently used items, to be sold on ebay for the Joe Niekro Foundation. Proceeds to benefit brain aneurysm research, education and awareness.


For questions please email Jennifer or Kari at mwva@me.com

We hope you can join us!

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