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