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In the back of Time's, March 4, 2002, issue (Personal Time Your Health  Sanjay Gupta, M.D.) Mr. Thompson spoke on the issue of Mammography and it was commented that Mrs. Thompson "learned she had breast cancer after having a mammogram..." The short news did not comment on Mrs. Thompson's health today, but we hope she is well and continuing the battle. Our hearts are with her. 

In that same page in Time magazine, Dr. Gupta discussed the issue of cerebral aneurysms and the choices of Clip or to Coil. Let me say, on the left side of my brain, over the ocular artery, I have both, a 4 mm clipped, and a 10 mm coiled. Another, 5 mm over the left eye, waits for a miracle since I will be blinded when it is clipped or coiled. But you did not discuss an illness that for many of us grows silently and with deadly intentions and its associated with aneurysms; Fibromuscular Displacia. 

There is an invisible illness called "Fibromuscular Displacia" (FMD) is a nonatherosclerotic and noninflammatory vascular disease that primarily affects the medium-sized and small arteries, most commonly the renal and carotid arteries. Typically, FMD manifests itself generally through hypertension and stroke. Researchers (there are a couple) suggests that Caucasian women over the age of 50 are predominantly affected. But this is not so. 

Let me share some stories with you; 

"I have Fibromuscular Dysplasia and Fibromyalgia.   I was diagnosed with FMD in 1992.   I had gone to an ear/nose/throat doctor for a sinus infection and complained of hearing my heartbeat in my ear all the time.   The doctor said that was a sign of an older person with clogged arteries.   An angiogram showed FMD of the internal carotids with a 25% stenosis.   The doctors first thought I had severe clogged arteries with 80% blockage.  They acted so relieved to tell me I didn't have clogged arteries.   They just said, "oh, you don't have clogged arteries, you have fibromuscular dysplasia."  Then they just dropped it like it was nothing"  Patsy 

" I found Nancy on the Internet...emailed her, and guess what!  We found out we had SAME SURGEON, AT THE SAME HOSPITAL (UCSF)!  And within...months of each other! Nancy works as a secretary (has for many years) at a school in Santa Cruz, Ca. As her attached letter states, her sister had FMD, and died from it.  She lived many years "apologizing" for symptoms that Drs. could not diagnose...until she died. 

We have another member, Pat ********, who lost a brother in law to this disease.  He had headaches, a lot of body pains...No Dr (at that time, Med Prof did not have as sophisticated diagnostic equipment as they now have) could diagnose him.  Pat wrote that many days he would just lay in bed, ozoned under pain medication, due to headaches...and as I remember, other body pains.... He died.  They did an autopsy and found aneurysms and FMD".  Betty 

"Hi Celeste, thanks for sharing your story. I am a member of the group but I not a very active one. I  live in Barbados in the Caribbean and I am 52. It is almost a year ago that I had my symptoms of temporary partial blindness and I was diagnosed in April 2001 with FMD of the carotid arteries -- the right one with about 93% stenosis. My right renal arteries are slightly affected. I was on aspirin and am now on plavix.  I consulted doctors in New York and New Jersey. I have been ambivalent about angioplasty and stenting and my doctors have not been convincing about the long term benefits. I  exercise and eat carefully and I feel generally well except for bouts of tiredness usually some afternoons" Vivienne 

        "My sister had an Abdominal Aortic Aneurysm repaired when she was in her late 30's.  The August she died, age 53, she was admitted to the Hosp with a dissecting abdominal aortic aneurysm.  Also with uncontrolled hypertension.  It was inoperable because it was from her abdomen to her legs.  Within 48 hours she had the cerebral aneurysm spasm or leak, where in her head I do not know.  It wasn't a carotid artery.  Soon after that the abdominal aortic aneurysm dissected up into her chest and the aortic arch.  Once the aneurysm got to the aortic arch it probably ruptured and she died.  She also had poor kidney function and that along with smoking added to her high blood pressure problems".   Nancy 

There are more stories similar to these, many more. Some include parents whose children (both genders) have been stricken since birth.  Sharon Stone was stricken with aneurysms to the brain and we wonder, no, we know, FMD is probably in her. Bob Doyle also had surgery to deal with an aneurysm. Have you heard from either of them since? 

The research from NIH suggests this is genetic although many of us do not believe the research, particularly when the researchers say "no research has been done"...they also suggest that those with FMD have short morbidity, but they are not able to tell us when FMD began. The worse part is that most doctors do not know what is Fibromuscular Displacia. Further, most doctors do not know how to tell a patient about FMD with compassion and understanding. The stories we are compiling speak loudly about what I am saying here. 

Me? My doctor (PJ) treated me for sinus, never treated the high blood pressure that began in September 99, and if not for a family member suggesting that I obtain an MRI of my brain, I would not be writing to you today. On April 10, 2001, at 49, I was diagnosed with multiple brain aneurysms and FMD among other illnesses. After a stroke and considerable pain and suffering I am here, waiting...but not alone. 

We are seeking champions to help us find researchers who will discover a cure. Ourselves, we are researching ourselves and wondering if collagen in the arteries is the culprit.  We have written to the White House (Mrs. Bush), to newspapers, and to a company that was awarded an NIH award and may work with us. We wait to hear. 

Our numbers are growing. We created a site called WWW.FMDFAQS.COM so that people can find information and the numbers are growing. Something is wrong that FMD is killing us, quietly, secondarily, anonymously.  We need your help...you may be an FMD victim as well...we pray you are not. Please, be our champion, help us live. 

                                                                                                         Celeste 

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