Fibromuscular Dysplasia (FMD) Community

Meet, discuss & support other patients or families living with Fibromuscular Dysplasia (FMD). Contribute to topics, or just share what's on your mind

ok68
moderator

Hi and let me introduce myself.......

My name is Cathlin and I have just taken on a moderator role here on rare connect for the Fibromuscular Dysplasia community. I just wanted to introduce myself - I was diagnosed in 2015 with focal FMD of my right renal artery, found following investigations in to hypertension.
I underwent a renal angioplasty in Dec 2015 and was eventually able to stop my BP medications. My head and neck arteries were screened for any FMD involvement and none was found.
I have yearly follow up appointments with doppler ultrasound to monitor my renal artery. I will also have 5 yearly scans as I have focal FMD which can have a higher incidence of progression. I keep my fingers crossed that progression is not in my future but at least if I'm being followed it will be picked up sooner rather than later.
During and following my diagnosis I searched for as much information as I could on FMD which led me to the FMDSA website which was able to provide me with lots of information as well as patient experiences through the INSPIRE site. I did however struggle to find information in French, as I live and am being treated in French speaking part of Belgium. This prompted me along with two other FMD patients to get involved in starting a Fibromuscular Dysplasia patient association in Belgium. We launched FMD-Be in Dec 2016 (in French,Dutch and English) at the 2nd National FMD meeting in Brussels with the help of Prof.Alexandre Persu and Prof.Patricia Van der Niepen, the FMDSA and FMDGroep.NL and the other international patient contacts through FMDSA.
One thing that strikes me in my short experience of being a "patient" is the need for "rare disease" patients to join together across continents if necessary to get access to up to date and valid information, as well as the chance to share stories and offer each other support.
I hope that if anyone is in the process of being diagnosed or recently diagnosed they feel they can ask questions or share their experiences here.
I look forward to hearing from you :-)