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

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?

that there is hope and that you can live your life. You may need to change things and you will need to be monitored but it does not have to be the end. Since 2004 I have needed to 7 renal angioplasties to my renal arteries due to FMD. I am one of the lucky one mine was found before I had a major event. I would also state that a person needs to find a doctor who understands FMD to get the best care.

formerEURORDISstaff
moderator

Hi Irene,

Is there a resource or list out there of health care professionals or clinics that have experience with FMD? Any places or researchers in Europe you are aware of?

Hope and getting support and information from people who know FMD is a great point.

Since I live in th USA I do not know how it would work in Europe however, a teaching hospital may be able to provide doctors who will have a better understanding of FMD. In my case 2 years after I was diagnosed my insurance covered me to go to the Mayo Clinic in Rochester, MN 90 miles form where I live. It was wonderful it was the first time someone could explain FMD to me. Tests were oredered to check other arteries. After 2 years I was unable to continue to receice care at tMayo I was lucky that I found a great doctor at a local vascular clinic who I have complete trust in. So a person could check teaching hospitals if that does not work look for a vascular clinic.

FMDChat
moderator

We're working on putting a list together of patient-recommended doctors who have an FMD patient in their care—general/family docs, vascular, rheumatologists, OBGYNs, etc. The idea is for PATIENTS to have a say in whether a doc knows about FMD and actually helps care for the patient in terms of symptoms. We encourage patients to contribute to the list by filling out a brief form. Recommendations will not be linked with specific patients, but the list will help other patents find a doctor in their area who may be a good fit in helping manage their care.

To contribute to the list, visit:
http://www.surveymonkey.com/s/SMDNKWZ

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.