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