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

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