"Faces of FMD" Patient Stories

We've started to collect stories from around the world and wanted to provide an outlet for the sharing of these personal experiences. If you are interested in including your story, please contact us.

Adult FMD

Phyllis Baker
Well, here is my story. My name is Phyllis Baker. I was born and raised in New Orleans, LA until we were transferred here in Houston, TX in 2003.  Continue reading...

Andrea Bettoni
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. Continue reading...

Mimi Petersen
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! Continue reading...

Jodi Roth
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. Continue reading...

Ruth Petersen
My name is Ruth Grace Petersen. I am 50 years old, and I live in Colorado. My story is very complicated, so here is the short version. Continue reading...

Lisa Fettig (Pregnancy and FMD)
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). Continue reading... 

Shannon Shivers
Feb. 16, 2008 was a day that can be recorded as a day of miracles! I was 31 (now 32 since November), training for a half-marathon, and had received top reports from my yearly physical just 2 weeks before. Continue reading...

Melva Buck
I was born into a home with 4 children. I had a much older brother and sister and a younger brother. Much of my memories are a blur. My mother seemed to have severe problems with pain, menopause and possibly depression. I became very emotionally bottled within. Continue reading... 

Patricia Austin
My name is Patricia Auston. I have been a registered nurse for almost 30 years and specialize in Rehabilitation and Neurology. Continue reading... 

Bruce Tagg
I’m a 52 year old man employed as a Safety Consultant for a major insurance company. My wife and I eat healthy utilizing organic products, no red meat and a minimal amount of processed foods. Continue reading...

Nakia Hughes
My name is Nakia Hughes. I am a 33-year-old mother of three. After reading stories posted by other FMDSA members, I guess I should consider myself blessed, as I was diagnosed with FMD before having to go through a life long experience of pain and being uncomfortable. Continue reading...

Susan Bell
I haven’t yet decided if having a rare disease is a good “thing” or a bad “thing” – but it certainly is some “thing”…My symptoms started, I thought, in my late teens. Continue reading...

Rochelle DesRochers
Growing up (in Ontario, Canada), I always seemed to have a lot of health problems, including three eye surgeries and chronic kidney/UTI infections. It just seemed the norm for me and it didn't seem to interfere with my participation in sports or any other everyday activities. Continue reading...

Tracy and Alex Toto (mother and daughter with fmd)
When I was 13, I needed a physical to go to camp over the summer. At that routine physical it was noted that my blood pressure was 180/110. The doctor told my mother that I was probably just anxious and not to worry about it. Continue reading...

Pam Mace
Pam Mace of Rocky River, Ohio, was diagnosedwith FMD in 2001, many months after having a
transient ischemic attack (TIA) at age 37. She joined theFibromuscular Dysplasia Society of America (FMDSA) soon after to raise awareness of this disease. Continue reading...

Brenda Brondrick
My name is Brenda Brodrick and I live in Olathe, Kansas. Although I had symptoms earlier in my life, my diagnosis begins in 1995, when during a routine Dr. visit my blood pressure was high. My pressure was too high for a person like myself that was not overweight, ate healthily, taught dance lessons, and exercised regularly. Continue reading...

Carrie Kollar
My name is Carrie Kollar. I am a 31-year-old mother of two beautiful children, Nick and Mia and married to my best friend, Joe. I was previously an ICU Nurse and currently I am leading the IV Safety Team at a St. Louis hospital. I was diagnosed in May 2009 with FMD. Continue reading...

Shannon Engel
February 9, 2010 turned out to be an evening that I'd never forget. For those of you who don't know me, let me introduce myself - my name is Shannon Engel, I am 37 years old, have been married for 15 years and have two great kids. Continue reading... 

Barbara McFee
I am a Registered Nurse who also served as a Coroner for many years. I have a Master's degree in Administration. My diagnosis of FMD of the right renal artery was made when I was 66 years old which is rather old according to all the literature that I have read. Continue reading...

Tracey Conard
I woke up on the morning of March 10, 2011 with what I thought was a bad migraine.  Continue reading

Adolescent FMD

Kelly Paprota
I was 17 years old when I was first diagnosed with FMD. I was very active—played on my school’s soccer team, was Class Treasurer for Student Council, sang in my high school show choir, and played violin in the orchestra. As far as I knew I was healthy…I didn’t really think much about my health to be honest. Continue reading... 

Jeffrey Sweeney
Hello, My name is Jamie Cribb and I am the very proud grandmother of Jeffrey D. Sweeney age 14. January 17th, 2010 our Jeffrey was outside sitting with friends when he became dizzy and started having a headache. Continue reading...

Pediatric FMD

Ayaana Daruka
Hi! My name is Manisha Daruka. I live in Jaipur in India. I have a 5 year old son, Ahaan, and a 1 year old daughter, Ayaana. Neither my husband nor I have any family history of FMD or any stroke related disease, but my daughter Ayaana has been diagnosed with FMD recently. Continue reading...

Jordan Diggs
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. Continue reading...

Jacob Grunewald
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. Continue reading...

Tracy and Alex Toto
When I was 13, I needed a physical to go to camp over the summer. At that routine physical it was noted that my blood pressure was 180/110. The doctor told my mother that I was probably just anxious and not to worry about it. Continue reading...

Aiden Rae Gabel
"All kids have high blood pressure when they are sick", is what my husband was told by the nurse during a 'sick' visit to my then 5 1/2 year old daughter's pediatrician. Aiden had a cold, nasty cough, headache and a slight fever. Her BP was 180/105. Continue reading... 

PLEASE NOTE: FMDSA is not responsible for the accuracy of our patient stories, nor any medical conclusions contained therein. The purpose of this section is simply to provide a forum for our members to tell their stories in their own words.