Dear Gentlemen,

This letter is not to criticize the ER television program nor is this letter to praise it, although I do enjoy watching it. This letter is more of an idea submission. 

I am the daughter of a woman who was diagnosed at age 54 with (FMD) Fibro Muscular Dysplasia. Here is a synopsis of how my Mother came to be diagnosed with FMD.

Around August of 2000 my Mother started having difficulties. She suffered from hypertension (high blood pressure), nausea, diarrhea, and severe abdominal pain. When her General Practitioner could not figure out what was wrong with her she was referred to a Gastroenterologist and was misdiagnosed with an over active gall bladder which was removed. She spent a night in the Cardiac Unit at a local hospital to see if the problems she was having were heart related. Her heart is fine. Finally after being given a CT Angiogram she was referred to a vascular surgeon and was admitted into the hospital immediately following her visit to him. She was diagnosed with Mesenteric Ischemia (blockage of arteries to the stomach) secondary to Fibro Muscular Dysplasia (FMD). One artery to her stomach was 100% blocked and a second artery was 90% blocked. She also showed FMD in her right renal artery (kidney). No surgery is planned at this time.

Sometime between the end of her surgery and one o'clock the next afternoon she suffered a stroke also secondary to FMD. Her right carotid artery was 100% blocked.

I went online and performed a search for more information about FMD. By chance I happened across a message board with a string of posts from people who suffer from FMD. I sent E-mail and got connected to what we loving refer to as our FMD Family Group.  People in the group suffer from FMD affecting nearly every area of their body. Some have even had brain aneurysms caused by FMD.

We have discovered that there are very few Medical Professionals who actually know about this, what I describe as a degenerative disease, and even less information on the subject. As far as we know there are no research studies being conducted. We have, by the hard work and dedication of one of the group members and her husband, set up our own web site to share information with others (www.fmdq.com). There is also a Yahoo web group site where the members have a message board (http://groups.yahoo.com/group/Fibromuscular_Dysplasia/).

This is the basic information we know about FMD at this time:

At this stage, the cause of FMD is unknown.

FMD affects women three times as often as men. However, both sexes can be inflicted with FMD.
 
The most common age for diagnosis is between 30 and 50 years although there have been cases of young children diagnosed with FMD as well.

If diagnosed at a later age diagnosis is usually preceded by stroke.
 
In the kidney arteries, involvement is most often on the right or bilateral.
 
Several arteries may be affected in one patient.
 
More than one member of a family may be affected.

Recently a young woman joined our group. The following briefly tells the story of how her own Mother was diagnosed with FMD only 8 days before she died from complications from the damage FMD caused.Here is her story:

On the morning of August 30th my mother was feeding my oldest son in his high chair and suddenly thought she was having a heart attack. She could not breathe and had extreme pain in her back. We took her to our local hospital and they ran tests but nothing until 3 hours later when they ran a CT scan--they found she had a type B Aortic Dissection! 

They life-lighted her to our closest "heart hospital" and they all decided she would heal on her own if given enough rest time in the hospital--all the "specialists" opted for the no-surgery route. Under the impression that she would be fine, we left and the next morning during our allotted 10 min visit to her in the CVICU -- they could not control her blood pressure, for three days they tried to regulate it with every drug under the sun...then they found the FMD. 

AFTER two attempts and failures at stints being placed. She had the dissection that creates a false lumen -- which would not allow blood to flow back into the arteries. They tried to patch it, stint it and nothing worked because her pressure was so strong. The kidneys started to fail. 

As a last resort on the morning of the 7th of Sept -- a last ditch stint -- and finally a bypass (open heart). She arrested twice during the bypass (one time for 15 min and the other for 5 min--she came through ok and lasted another 2 hours with regulated pressure and then she started to fail--we were looking at having her with brain damage, and dialysis, and paralysis. She was 49 and died on Sept 8 at 5:50 am. 

We let her go (my father and I) -- the hardest thing I will ever have to do. She was a grandmother (new) of 2 one 2 years and the other 2 months, she will never see them grow up. She played golf everyday, ate a decent diet and enjoyed life. Never smoked or drank--just lived. She had never had high blood pressure, hers was always so low, and they were always worried because it was that low! -- She just started having bouts of irregular high blood pressure in the last six months. Maybe 6 times in all -- they found a diseased renal artery and consequently think that this is what led to the high blood pressure and then to the dissection in the aorta wall. 

I am terrified now because I have 2 children so young.... I have every symptom she had except for the blood pressure highness -- and they want to do an angiogram, I watched my Mom have three in 4 days (and look where it got her!) What do I do? They said it might be possible to have a heart scan as well and maybe see something there????? -- Thanks to all of you who wrote I TRULY appreciate it! My dad and I are researching what we can but cannot find a whole lot; does anyone know where I can get a video of the bypass procedure they performed on my Mom? 
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I am sharing some of these stories with you because I have written to numerous Medical Journals and newspapers in the hope that they would do a story on FMD. I have also contacted several Medical Schools across the country E-mailing a minimum of 10 professors (maximum of 25) at each school asking them to expand their curriculum on the subject. I have even E-mailed Oprah and the former First Lady (Senator Hillary Clinton) asking them to take up the cause. I have only received back 2 E-mails basically telling me “Good Luck”.

At this time there are no research studies being done that I know of. I have even considered sitting in the lobby of a Medical Conference holding a sign saying “Could YOU diagnose FMD?”
Boise Idaho is not a large metropolis by any means, but we do have educated doctors and nurses here. Nearly every time I have accompanied my Mother to the local ER I have had to explain to the doctors and/or the nurses what FMD is.

My Mother has been disabled from the stroke and dealing with Social Security Disability and the local Welfare assistance program has been quite a challenge also. I am finding myself with my limited knowledge of the disease having to educate the determination doctors as well.

So tonight as I watch television and watch the advertisement for tomorrow’s ER show I wonder if you would consider doing an episode that involved an FMD patient? I know that the mere mention of FMD on your show would raise the awareness of the desease to several million people. It could also very well save the lifes of many,young and old.

I know that you could do in a one-hour television program what I have been unable to do in nearly two years. 

I realize I am asking a lot from you. But you see, I am simply a child who is afraid of loosing the only parent she has left. I am determined to explore every avenue I possibly can in bringing more attention to FMD.  I am also fearful for my children, my grandchildren, and myself. Your show could give FMD victims a voice and hope.

Thank you for your time and consideration.
 

With Heartfelt Gratitude,
 
 
 

FamilyLDR