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