STORIES

We've started to collect stories from accross the country. Children, teenagers, men and women, husbands, wives, sons and daughters all who share one thing in common - Fibromuscular Dysplasia.

From diagnosis to treatment, listen while several share their unique tales of their experiences with this rare disease.

PLEASE NOTE: FMDSA is not responsible for the accuracy of our patient stories nor any medical conclusions contained therin. We are simply providing a vehicle for our members to tell their stories in their own words.

Jordan Diggs - age 9

She's a giggly girl.

She says she's funny too, knows a lot of jokes. But when you ask her to tell one, she just giggles instead.
The giggle and a big, toothy smile cover up that Jordan Diggs, 9, has been sick most of her life.

She has fibromuscular dysplasia. The Web site E-medicine.com defines the condition as an “arterial disease of unknown etiology typically affecting the medium and large arteries of young to middle-aged women.”

The condition is rare, according to Jordan's parents. It affects arteries in different parts of the body. In Jordan's case, she has arteries that look like a string of beads in her kidneys and in both her small and large intestines.

If the condition moves to the carotid artery, it can cause different kinds of strokes. How serious is it? E-Medicine.com says in the United States, the condition is found more frequently by autopsy than by other means.

The bubbling 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 4.

Her blood pressure hit 299/148 at that time. She was sent to Piedmont Medical Center, but the Rock Hill hospital sent her home and told her to come back if she didn't feel better the next day.

Jordan's mother Emily said the family took Jordan to Dr. Sam Stone after coming back, and he sent Jordan to Carolinas Medical Center.

Her main problems now are focused on her intestinal arteries. She gets nauseous and doesn't want to eat or drink, so she suffers from dehydration frequently.

She doesn't like to say how she feels when she's sick. She remembers the gas and feeling “funny” when she was anesthetized way back when. Emily Diggs remembers the emergency staff at CMC having to give her daughter an intravenous drugs to get her blood pressure down. Doctors were afraid the girl had had an aneurysm until they took a look at her kidney veins.

Jordan has had angioplasty a couple of times on her renal arteries, the ones in her kidneys. She is young, and those arteries haven't fully grown yet. The ones she has had worked on are just big enough to allow the smallest “balloon” insertion to be put in to open up the arteries.

She's had balloon angioplasty done to one artery in her left kidney and to two arteries in her right. She's got to wait until she's grown up more to do other angioplasties on her intestinal arteries.

She can go to school with her friends, but she often has problems when she doesn't eat and drink enough. So she has been in and out of the hospital all her short life. The condition can be life threatening. She goes for routine exams every four to six months. It's been almost a year since she was hospitalized for dehydration. She admits, with a giggle, that she didn't have any problem eating or drinking last week.

The Make-A-Wish Foundation, an organization that grants the wishes of children with life threatening medical conditions, accepted an application from Jordan's family, signed off on by her specialist in Charlotte, to grant Jordan's wish. She wanted to go to Disney World, her mother said.

She got to do that, and more. The foundation paid for a week in Orlando, where the entire family, Jordan, her father Bill, Emily and Jordan's 11-year-old brother Tyler, they took in all the attractions - Universal Studios tour, Seaworld, GatorLand. Jordan got to meet her favorite princess, Cinderella. It was a special week. She didn't know if she was the only kid in her school who got to go to Disney World for Spring Break, but Tyler knew he was the only one in his class to go.

Jordan hugs her kitten Chloé as she talks about her trip. Her father “got scared” on the Dino-Putt golf course. “Who knew the dinosaur would spit water?” Bill says. That was the “most funniest” part of the trip, Jordan said.

They went to the Animal Kingdom and Expedition Everest more than once at Disney, all the while staying in a villa. Everything was paid for by the foundation. Bill took “about a thousand” pictures over the week. They got away from some of the harsh realities of Jordan's conditions.

Bill was just laid off from a warehouse company, but had an interview Thursday. Emily has insurance at her job. Jordan does qualify for Medicaid, so the medical expenses for all the doctor visits and emergencies and prescriptions are paid for, after they met a $500 deductible and a $1,500 out-of-pocket equipment.She's 9, and she's taking two blood pressure pills. Two pills for her stomach. Two pills for epilepsy, and a pill for attention deficit hyperactivity disorder. She's a little girl on a lot of pills, waiting to grow up big enough to get the surgery to open her arteries up.

The Make-A-Wish Foundation gave them a week away from it. It's motto says it tries to “enrich the human experience with hope, strength and joy.” After meeting SpongeBob, Micky and Minnie, Goofy and Pluto, Barney, Spider-Man, etc., Jordan's smile showed her joy.

ANDREA BETTONI
European Adult Male Patient

Hi, my name is Andrea Bettoni, in spite of my name I’m a 33 male.

At the age of 31 I suffered from a heart attack, during a morning run. Fortunately I was close to my parents’!

I was immediately hospitalized and I was put 2 stent. No doctors thought that it could be suspected to have a heart attack at that young age & with apparently excellent medical conditions (except the fact that I was a smoker !!!).

Since that I kept continuing have chest pain until I was hospitalized again and put a third stent.

My conditions, unfortunately, didn’t changed: being not convicted of the reasons of my heart attack and the misdiagnoses of the doctors I went to ( fortunately my oldest sister I a doc…. ), I underwent a whole series of scans and tests.

I’ve been visited by a haematologist that prescribed new blood tests, I found out I suffer from a genetic mutation called MTHFR 1298 – Homozygous.

I kept on searching for the disease I was suffering, I wasn’t satisfied & and most important, I wanted “my life” back.
Looking back now, I can say that that thought helped me the most.

I had a coloured ecodoppler that revealed that I had a lots of very small clothes in every artery; doctors tried to destroy them by giving me aspirin but the clothes grew up until there was 90% occlusion of the superior mesenteric and the internal left carotid: a biopsy has been made on my right temporary artery & “finally” I had the response: I was suffering of Fibromuscolar Dysplasia.

By this time I can say that I’ve been lucky because the carotid stenosis grew until 100% twice: I just suffered from some worst headaches with no other consequences.

Nowdays I’m pretty fine, I just have to take my pills everyday and one ecodoppler a month : after all, I still consider myself a lucky one, maybe just because I’m still here & can talk about my “bad experience” hoping that it can be useful for somebody else.

Mimi Petersen
California Adult Female Patient

I remember when I was a little girl how interested the doctors were always with my abdomen. While doing a routine check-up they were always commenting on my bruits. Being young I was very proud of these, after all I was unique! As I became a teen I realized that perhaps these bruits were not necessarily a good thing. Yet there was never any testing just a lot of "hmmmmmmmmm" 's. By the time I was 16 my blood pressure readings were beginning to be high. Of course being still very young, I assumed if there was a problem it would be addressed.

At 18 years old a medical facility outside of my HMO informed me that I had hypertension and should address this with my primary doctor(s). This was when I was "officially" diagnosed with hypertension. No longer being given the 'white coat' diagnosis, hypertension was now acknowledged. Unfortunately I was not given any type of work up to determine the cause of my hypertension (although I had bruits in my abdomen area). I was told to not smoke (which I didn't and still don't), not to take birth control pills (I went off the pill), and to be prepared that I could have a stroke by the time I was 40. I am pleased to say that I am now 51 and have yet to have a stroke. But, with years of hypertension behind me this is a true and great fear I have.

It was now the norm for me to hear from every doctor visit "you are to you young to have hypertension". Yet still no arteriograms, or further investigations. I gave birth to my first son at the age of 26. I had pre-eclampsia during delivery , with a bevy of doctors in the delivery room. I was very scared. I was told after that birth that I should consider not having any more children. Not yet being the assertive and inquisitive woman I am today (and with out the advent of the internet), I was not quite sure of the reasoning behind that statement. So I forged ahead and had baby number two. As I remember my B/P was rising and there was some concern during delivery, but my second son came at rapid speed and the birth was far less eventful than the first.

When I was 28 years old, it was finally determined that I needed an arteriogram to check my kidneys. At this point I was told that I had an atrophied right kidney due to birth defect. I was put on B/P meds at this age. Ten years later when I requested medical records there was a notation of Renal Artery Stenosis.

The turning point in my medical care came at the age of 39. My B/P was still high on two meds. If it had not been for a friend who was a nurse and insisted that I pursue this, I might still not have been diagnosed. I left the HMO that I had for 39 years. When I met with my new internist for the first time, he said my B/P was not acceptable for someone my age. He asked me who was my nephrologist. I did not even know what a nephrologist was. I was immediately referred to one. Everything started moving fast from that point. I had rennin samplings done on my 'atrophied' kidney and an arteriogram done on my other renal artery. It was at this point that I was diagnosed with Fibromuscular Dysplasia. My understanding is that the FMD was what had caused my left kidney to atrophy as the renal artery had become severely stenosed. It was emitting a high amount of rennin (a nasty hormone that was increasing my B/P. Also my right renal artery had Fibromuscular Dysplasia. The suggestion was to embolize (coil around the artery to render it lifeless) the left kidney to stop it from producing the high amounts of rennin.

Also I was to have angioplasty on the right renal artery to open it up for better blood flow. By this time I was using the internet and trying to advocate for my health. There was not much available at this time (1999), like there is now, none the less it was very helpful. I also had a second opinion at UCSF before I went ahead with the embolization. They agreed that it was in my best interest to stop that kidney from preventing the rennin. I had both the embolization and angioplasty done in 1999. Unfortunately years of hypertension are not so easy to get under control. I was back in for another angioplasty 4 months later. Through the years I have had approximately a total of 14 arteriograms/angioplasties. I have been on numerous B/P meds.

In 2006 my right renal artery appeared open and clear. Yet my B/P has remained high. A few doctors suggested looking at the embolized kidney to see if it perhaps it was still emitting rennin. It had been noted that there was a collateral artery that was still feeding this kidney and helping it barely hang on. Turned out that kidney was emitting a significant amount of rennin. I had left kidney removed by laparoscopic nephrectomy in March of 2007. The procedure seems to be a success as I have been able to reduce my B/P meds in half. In addition to my renal FMD, I have carotid and mesenteric involvement. I am being followed by a wonderful vascular surgeon at the University California San Francisco Medical Center. I have follow up ultra sounds every six months to monitor the status of my FMD.

It is my hope that in sharing my story it will bring awareness to this disease. I feel because of the efforts of the Fibromuscular Dysplasia Society of America , that perhaps other children will not have to suffer a lifetime of hypertension due to lack of diagnosis. Furthermore also having FMD in my carotids, I think it is imperative to share with health care providers that FMD has been recently recognized by the National and American Stroke Associations as a cause of stroke. Sometimes I am frustrated about all the medical care providers who are not aware of this disease. Yet I take great comfort in knowing that I am spreading the word about this disease.

Mimi Petersen
Sebastopol, CA
707-829-6648/imim1256@yahoo.com

UPDATE: Nephrectomy was done 3/2007 There has been a reduction in B/P meds

Jodi Roth
Female Adult Patient

Hi, my name is Jodi Roth. I am a 38 year old mother of two young daughters and I have fibromuscular dyplasia of the renal arteries. My journey with this disease began by accident in May 2004 while I was sitting at my kitchen table having a medical exam for a life insurance policy. The doctor took my blood pressure and it was extraordinarily high so I followed up with my internist. My internist was quite surprised how high my blood pressure was given that I am thin, in good physical shape, eat pretty healthy and don't smoke or drink.

After several months of doctors visits, medication and many tests, a local Cardiologist heard a brui in my renal arteries and sent me for a renal MRI. When he called me and asked that I come see him, I knew the results were not good. Later that day he told me in person that I had Fibromuscular Dysplasia in both renal arteries and that I had an aneurysm on my left renal artery. My life flashed before my eyes, and all I could think of was that I wouldn't see my young daughters grow up. I was devastated.
Then, of course I started researching this disease and tried to learn as much as possible about it as I could. I found the FMDSA website which educated me a great deal about this disease and I immediately became a member of FMDSA.

I went to an Interventional Radiologist for angioplasty on my right renal artery and an attempt to cut off the aneurysm on the left renal artery, but it was unsuccessful as the aneurysm was too close to my kidney. I was then referred to Dr. Andrew Novick at the Cleveland Clinic and in January 2005 underwent renal bypass surgery on my left renal artery to remove the aneurysm. It was a long and difficult recovery, but luckily it was without major complications and my blood pressure went back down to the normal range.

I go for renal scans every 6 months and recently had an angioplasty on my right renal artery which had re-narrowed. Physically I feel great and I continue to exercise 3-4 times a week doing cardiovascular activities and strength training, and I try to live a very healthy lifestyle. I have a wonderful life with my husband and kids and I keep an extremely positive attitude about this disease. It's not going away, but as long as I am vigilant about getting scans and seeing my Vascular Dr., it is very controllable. Like many other FMD patients, I want to know how I got this disease, if my daughters will be affected by this disease and how it may affect me and others throughout the years. That is why I believe it is so important to help raise awareness of this unusual disease and to continue to support the FMDSA.

Lisa Fettig

My name is Lisa Fettig. I was diagnosed with FMD in both renal arteries 3 years ago, when I was 34. I am a dietitian in a dialysis clinic. We were checking everyone’s blood pressure at work one day and discovered that mine was quite high (180’s/90’s). It had always been normal in the past. I considered myself to be quite healthy (normal weight, exercise regularly, eat well, etc.). I didn’t have any symptoms. One of the nephrologists that I work with said I probably had FMD. I had never heard of it. She ordered all kinds of tests to rule out other things, which all came back fine. The last thing was to do the renal angiogram, which showed the classic string of beads appearance. Angioplasty was done and my blood pressure came right down to normal.

I thought I was cured, but within a week it started going back up and I started medication. Since I was kind of trying to get pregnant, Labetalol was used. I hated it because of the side effects, but it did keep my BP under reasonable control. I suspect that I have carotid FMD, also, but it has never been diagnosed. I had a carotid ultrasound, which was normal, but I have had some of the symptoms (optic migraines, swooshing noise in ears sometimes, etc.) of carotid FMD for the past 20 years.

Last Februrary, I found out I was pregnant (first child). I saw a high risk OB, who told me I had a 50% chance of preeclampsia. I was scared to death of that or a stroke. By March I had to stop the Labetalol due to low blood pressure. My blood pressure stayed in the 110’s – 130’s the entire pregnancy without any meds, which was great. I walked almost everyday and continued lifting weights and riding a bike a couple times a week throughout the pregnancy. I gained 25 pounds or so.

My nephrologist did some basic labs and a 24 hour urine early in the pregnancy for a baseline, but then she went out on medical leave and I did not see a nephrologist the rest of the pregnancy. Due to my age and BP history, the OB ordered regular ultrasounds (I had 6 total) to make sure the baby was growing appropriately. I also had to go for non-stress tests twice weekly during my last trimester. That was a pain, but worth the sense of security.

In October, 10 days early, I delivered a healthy 7 pound baby girl. There were no major complications during the delivery. Within a week of delivery my BP started going back up and I went back on Labetalol, because I was breastfeeding. When I stopped breastfeeding, I was able to switch to an Ace-inhibitor, which controls my BP very well with few side effects. The baby is now 5 months old and we’re both doing great!

At 2 1/2 years of age I noted that Jacob complained of his head hurting. He was treated for sinus infections. At a 3 year check-up he was noted to be incidentally HTN. He was worked up for kidney involvement and everything came back negative.
Then he had a CT for continued c/o headaches, which showed basilar artery enlargement.
MRI findings showed small and large vertebral arteries with enlarged basilar artery enlargement. He had an angiogram which showed 3 high grade stenoses greater than 95%. Some having the appearance of webbing. His Right internal Maxillary artery is mildly diseased, Right posterior cerebral artery is irregular and Left opthalmic artery is involved. He has white matter changes in the peri-atrial regions with focal areas of leukomalacia. He has 4 right renal arteries and 2 left renal arteries. He previously dissected his LICA and now his LICA is markedly diminished in caliber with focal stenosis or occlucion at the level of the cavernous segment. The intracranial internal carotid artery is reconstituted by collateral flow. Narrowing of the RICA with short segmental stenosis noted on the MRA of the brain in 2004. He has compensatory enlargement of the vetebrobasilar system and presence of pial collaterals. Mild prominence of perivascular spaces in the cerebral white matter most pronounced posteriorly.
He was diagnosed in Cincinnati Ohio in July 2000 with FMD
He had a Angioplasty of his RICA in June 2001
No strokes since. Questional TIA's since 2001 however.

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