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.

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Introduction, newly diagnosed

Hi everybody, I just thought I would check in and introduce myself. I am 61, Iowa and have just been diagnosed with FMD. My local doctor found bruits in my left carotid and both my renal arteries during my routine yearly exam so she referred me to the Mayo Clinic where I was diagnosed. I consider myself lucky since my high blood pressure is easily controlled with a low dose of Lisinopril and I have no other symptoms except a whoosing in my ears once in awhile. My cholesterol and triglycerides are low. So in addition to regular followups I am eating a plant based diet, taking aspirin and exercising. I am not sure what else to do to help myself, so I am here to learn and exchange ideas and support.

ok68
moderator

Hi Jill,
Welcome to the community! Its lovely to meet you - sorry for your diagnosis, it sounds like you were directed to a hospital with FMD experience which is great news.
Have you found the FMDSA? http://www.fmdsa.org (the American FMD association)
They have an annual patient meeting coming up next month in Cleveland, OH the 19th/20th May, a chance to meet other FMD'ers and hear from some of the FMD "experts".
I will be going ( my first time). I see they also have two contacts in IOWA - if you go the patient support group page.
There is also FMD chat on Facebook ( which is a closed group - so you need to ask to join), or the INSPIRE FMDSA site where people can also post questions and share their concerns and find support from other FMD'ers.
I've just joined rare connect as a moderator and as you can see from previous posts its a small group of people, here in Europe we only have a Dutch and Belgian patient association so far ( we are in contact with the FMDSA and also the FMDAA (Australia) as well as the other International FMD contacts ) hopefully the number of countries having a patient association will increase as time goes on!! The UK are trying to get a group launched.
As you say, following as healthy a lifestyle as you can is a positive step, people also find educating themselves as much as they can about the condition and meeting others can be beneficial. As you may well have seen through the FMDSA site people suffer with a broad range of health issues - from no symptoms (when FMD is found through imaging for another health problem) to severely debilitating related to which arteries are involved. There are many peoples stories shared on the FMDSA site if you haven't already seen them they are well worth reading.
Wishing you well - and if you have other questions or thoughts don't hesitate to let us know.
Best regards - Cathlin

Thanks for your welcome. Yes, I have found the FMDSA website and I wish I could go to the convention next month, but we are in the middle of moving so attending a convention will have to wait until next year. I have also connected with Inspire as well as the Mayo Clinic community. I will email the Iowa contacts listed on the FMDSA, but like I said, I am in the process of moving so I might not get to that right away.

ok68
moderator

Good luck with your move.
All the best - Cathlin

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 :-)

ok68
moderator

The 10th FMDSA annual meeting, 20th May 2017 Cleveland, USA

The 10th annual FMDSA - (FMD patient group USA) will be held in Cleveland, Ohio, USA on the 19th/20th May 2017 at the Wyndham Hotel.
There will be International speakers sharing the latest research and developments and also the opportunity to meet other FMD'ers.
For details see here - https://www.rareconnect.org/en/community/f...

SUGGESTIONS FOR QUESTIONS TO ASK AT FIRST APPOINTMENT

HI! I am newly diagnosed with mild FMD. I have my first appointment with a vascular doctor and a neurologist on March 7, 2017.

What questions should I ask during my first appointment?

Thank you so much, in advance, for your advice and feedback. I feel very in the dark about this condition and don't even know what I should know or be looking out for.

XOXO

martacampabadal
moderator

Hi enoevian,

Welcome to the FMD community and thanks for posting here. I leave the FMD focused questions to the moderators. I wanted to share a useful link with you.

Prior to the visit, think about your specific symptoms and write down all relevant information. Concentrate on what you want to know, your concerns etc. and create a questions list.

Being informed is essential to your care and treatment so do your homework before your visit. This is good advice prior to any type of medical meeting to maximize your knowledge from the experience particularly when it involves a serious illness.
A super website is www.ahrq.gov/apps/qb which deals with questions before, during and after the visit.

Check this website as well made by the Agency for Healthcare Reasearch and Quality: http://www.ahrq.gov/patients-consumers/pat...

Please, let us know how the appointment goes.

Best,
Marta

Fibromuscular dysplasia

HI, I have my sister suffering from this disease and she is currently in Ukraine, where the analyses are sent to Germany, when in Ukraine there are specialized centers. Does anybody know about centers in Europe where you can make more in-depth analysis and diagnosis? Thanks very much in advance for your answers!

Tihana
moderator

Gentile Pasquale, benvenuto su RareConnect! Il mio nome e Tihana e lavoro come gestrice di comunità online qui! Per adesso non sono riuscita a trovare un centro specializzato per questa malattia, ma forse non sarebbe male contattare una delle associazioni europee dedicate alla FMD. La lista e i contatti li può trovare sulla nostra sezione Apprendere:
https://www.rareconnect.org/it/community/d...

Spero queste informazioni le saranno d'aiuto e che anche gli altri membri di questa comunità avranno dei consigli utili.

Un caro saluto,
Tihana

Grazie mille Tihana per la pronta risposta e per i consigli dati
distinti saluti Pasquale

Just diagnosed with FMD

Hi
I was recently diagnosed with FMD and have had few questions answered. My GP knows nothing about the disease....in fact I have been educating her with what little facts I have.
I have suffered with migraine for more than 20 years, but when they changed in the fall of last year, I went to my Dr. She suspected that I had had TIA's and upon examination discovered an irregularity in my heart rate and that my BP was extremely high. She put me on high blood pressure meds, blood thinners and beta blockers and sent me for ECG and blood work immediately. I had a bad reaction to the medication and was rushed to emergency. They did a CT scan and sent me to the Stroke clinic. The Neurologist discovered I had carotid artery FMD and has ordered tests to check for renal artery FMD. (Still waiting) He said I had narrowing and roughening of the arteries, which to me does not sound like the bead type. I was sent to see a cardiologist to find out more about the FMD, but he did not even touch on the subject. Whether forgotten or avoiding I don't know. I need some help in finding qualified physicians on Vancouver Island that can answer my questions. Does anyone have any idea about who to contact anywhere in Canada? Thanks.

formerEURORDISstaff
moderator

Quality of life

I am wondering in what ways FMD affects quality of life?

What strategies do you and your caregivers have for coping? What information would you want to share with someone who has recently received a diagnosis?

formerEURORDISstaff
moderator

Nice, you are on that in a great way. I wonder how we can find specialists here in Europe

Hi Rob,

Thank you for asking about coping and strategies. I have been diagnosed since 2007, and it was not until recently that I realized that FMD/EDS is chronic, it has not improved but has progressed for me. I ran a local support group for several years, but my illness progressed and as it progressed I found my self becoming more isolated. I am currently relearning my coping skills with therapy. My physicians that play a very active role in my care. I have the help of my family, and in time I will be able to reach out to my friends again. Staying strong is not easy, and it is ok to take a break as long as you realize when it is time to get additional help.

Coping with FMD on a daily basis: After the diagnosis I was very afraid/concerned..... Problem, I am a neuroscientist (not a clinician). Why is that a problem? You know too much of some things and too little of the clinical consequences. But, I also knew from experience of my asthma that you will learn to cope.

So, taking a deep breath I asked myself what would help me. I changed my diet to low sodium. I love to cook and use already lots of herbs which helps to get great tasting food. My family got various nice salts on the table which they can add if needed. Interestingly, they lowered their salt intake too, since they slowly adapted to my life style. Together with the medication for blood pressure, my FMD is good to control. However, I regularly peak and nothing seems to be able to control these peaks. My pulsatile tinnitus is constant, but also peaking in loudness on some days and not always correlated to my blood pressure. I feel regularly woozy in my head which is not good for a scientist when writing or doing difficult experiments. It even affects my language skills and speaking (finding words is sometimes difficult, especially being trilingual). This worries me the most. Knowing that eventually I could have a mini stroke. I travel a lot and this lets me and my family worry what would happen to me if I am not near my usual hospital…. That is the reason I acquired an emergency ID bracelet which are not used in Europe as much as in the US and Australia. Still, I know in an emergency, hospital workers will get off your jewelry and will notice next to my watch the clear medial ID sign. In my purse I have a clear bracelet with a chip having all my information in various European languages. Just the bracelet on my arm has really helped me. My coworkers know that I have to stay on a low sodium diet, even if they do not really know my condition except for being hypertensive. Now they always bring in some fruit for me if they celebrate their birthday with elaborate cakes/tart (which contain often salt!). I am now grateful for every day I feel okay and try to remind me on those low days that there will be good days to follow.

An answer to the question of health care professionals/clinics in Europe: I live in Europe (Germany) and have the great fortune that the cardiologist at the university hospital was informed enough to connect the dots of my high blood pressure and other strange phenomenons that were noticed during my ICU stay for a pleurisy. I do believe (being very hopeful here) that most university hospitals should be able to make the diagnosis, especially since medical students tend to ask questions of what they hear and see.