Fibromuscular Dysplasia (FMD) Community

Learn how others live with Fibromuscular Dysplasia (FMD) and share your story

Elastine gene mutation

by Perrine published 6 months ago

Muscular fibro dysplasia patient from "family" with different symptoms based on the carrier. For me, narrowing of the renal arteries, of the aorta for my son, etc... Last year (2015), I had enough of not having clear information on this disease which has made my life miserable for years, without me knowing what the name was even if my symptoms were not normal for a young woman... Now ...

fibromuscular dysplasia

by mariec published 10 months ago

fibromuscular dysplasia, left renal artery and the left and left carotid arteries touched Hello to everyone who will read this,

It's been a month since the University Hospital neurologists have put a name to my disease (fibromuscular dysplasia), everything began at the beginning of June 2015 when I went to the ER for a bad headache, pulsing acouphene on the left and vision difficulties ...

My diagnosis

by staceyroberts published over 2 years ago

My name is Stacey I was 29 years old when my youngest son was born back in 2012. Two weeks after he was born he got sick we stayed a few nights in the hospital until he was healthy and mommy's back was messed up. I tell this story because having messed up my back probably helped save my kidney. It was February of 2013 I just had my first injection in my back and my blood pressure was cra...

Meet Jennifer

by RareConnect team published over 2 years ago

I am a 37-year-old mother of five children. I have suffered from complex migraines since I was in high school. When I was pregnant with my fifth child in 2011, I experienced the worst migraine I have ever had. I also experienced episodes of right-sided numbness that would resolve within a few minutes. I suffered for a week with the migraine before finally heading to the ER. This was only the se...

Meet Heather

Meet Heather

by RareConnect team published over 2 years ago

I had high blood pressure (typically near 150/110) for nearly seven years. I'd been to several doctors, all of whom blamed my phantom family history and my typical college student diet of ramen, condensed soup, fast food, etc. (most of which I added salt to, so I was inclined to agree). I was put on several medications and drastically changed my diet (low sodium, gluten free, no sugar, no ...

What's new in FMD?

by Cleveland Clinic published over 3 years ago

Dr. Gornik talks about recent developments in fibromuscular dysplasia (FMD): AHA scientific statement; FMD registry participants; and the International FMD research symposium. 

More information.

Fibromuscular Dysplasia in the News and on Capitol Hill

Fibromuscular Dysplasia in the News and on Capitol Hill

by FMDChat published over 3 years ago

FMD Chat Advocates for Rare Diseases & Research FMD Chat CEO/Chairman & Founder Sarah E. Kucharski, advocate Judy Brown, and FMD Chat Patient Advisory Panel member Fran Saplis participated in the Rare Disease Legislative Advocates' Conference and Lobby Day in D.C., as well as the 4th Annual RDLA Documentary Screening & Cocktail Reception at the Carnegie Institute of Science, an...

Meet Rebecca

by RareConnect team published over 3 years ago

In 2004, at age 26 and in her final year at university, Rebecca became hypertensive (typically 200/100) and was prescribed Atenolol in an attempt to reduce her blood pressure (as told by her mother Carol). The following year a MRI contrast enhanced MRA Renals Report revealed that Rebecca's kidneys looked normal on routine 2D images, but on contrast enhanced images, there was a long tight s...