Is anyone aware of ongoing discussions or research regarding Fibromuscular Dysplasia?
Interested in more discussions like this? Go to the Heart & Blood Health group.
Hi, I am a 61 year old female from Iowa who was recently diagnosed with FMD. I thought I would introduce myself to the group, I am here to learn as much as I can about my disease. My left carotid and my renal arteries are affected. I have high blood pressure and whooshing in my ears, but I am lucky, my blood pressure is easily controlled, and my cholesterol and triglyceride numbers are very good. So I am eating a plant based diet, exercising, taking a daily aspirin and just doing my best to stay healthy. I know there are no guarantees, but that’s life!
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You are most welcome. I forgot to mention several times a year FMDSA and the Cleveland Clinic have a online webchat with Dr. Gornik and Pam Mace. Dr. Gornik considered by many as the leading expert on FMD (Dr. Jeffrey Olin in NY at Mt. Sinai as well). Anyway you can find old transcrispts on the FMDSA.org website with tons of questions answered by Dr. Gornik.
Good luck with the move! Have gone through that and it is a task!
If I remember correctly Mayo Clinic sees more FMD patients than all of the registry sites put together. They use to be part of the registry but stepped down from participating the last I heard. I have been to the FMDSA conference and found it very informative.
@medicalmedia Welcome to Mayo Connect! So happy to have you here! Thank you for sharing the FMDSA resources! Is there any symptoms that bother you the most? The pulsatile tinnitus is something that I have learned to live with but it sure can be bothersome at times!
Hello @iagrrl and welcome back! You will notice that I have added your discussion to an already active thread so you can meet other members here discussing Fibromuscular dysplasia.
It looks like you have already met @kariulrich, one of our fabulous mentors on Connect. I’d like to also introduce you to @melanieangel @enoevian who also have FMD.
@sandrah1 The University of Michigan is working on FMD research, the lead investigator: https://www.med.umich.edu/cvc/heartofachampion/pdf/Santhi%20Ganesh%20-%20Heart%20of%20a%20Champion.pdf
Here is another way to contribute to FMD research: FMD Chat’s network is facilitating donations made In Memory of Ruthie Peterson and given directly to Dr. Richard Hughes’ research at the University of Colorado School of Medicine.
Hughes, Chief of Neurology at Denver Health and director of a Stroke referral clinic at the Anschutz Center for Advanced Medicine at the Fitzsimmons campus, is a Board certified Vascular Neurologist with an interest in prevention and treatment of ischemic stroke and hemorrhage. He is active in Stroke Public Policy, and is on the oversight committee for JCAHO/ASA primary Stroke Center certification, as well as on the committee which designs Comprehensive Stroke Center certification.
Dr. Hughes has an extensive history of Clinical Research in Cerebrovascular Disease. This includes multiple NIH Multi-Center trials for Cartotid Endarterectomy, Unruptured Aneurysms, PKD-Related Aneurysm natural history, most recently the Wafarin Aspirin trial in heart failure (WARCEF), and the soon-to-be released Insulin Resistence in Ischemic Stroke (IRIS). He has also participated in many industry supported trials, incluing CAPRI (clopidogrel), PROFESS (ASA/Dipyridamole vs. Clopidogrel), Acute Neuroprotection, PFO Closure, and in the earlty rTPA clinical trials.
Over the past 20 years, Dr. Hughes has become more involved in the scholarship of clinical stroke service delivery. After Co-Directing the Colorado Acute Stroke Network to support hospitals’ transition to the rTPA era, he has worked on the AHA national committes for the development and implementaion of Primary Stroke Centers, then Comprehensive Stroke Centers, and soon Acute Stroke Ready Centers. He currently sits on the AHA Hospital Accreditation Committee, which oversees all of the stroke and cardiac programs jointly administrated by the AHA and The Joint Commission.
Checks should be made out to ‘The Regents of the University of Colorado” with “Dr. Richard Hughes – FMD” in the Memo line and mailed to:
Attn: Kathy Illian, MA
Director of Finance and Administration
Department of Neurology – University of Colorado School of Medicine
12700 East 19th Ave Room 5021
Mail Stop B182
Aurora, CO 80045
@iagrrl …. I believe I know your cousin Jean! Wow small world, she was the principal at Southwest middle school when my youngest was there! She is missed in our district greatly! I am happy to hear you are going to Mayo, they are very knowledgeable with FMD. Most of us FMDers are type A personalities, so the fatigue can be very frustrating at times. How are you doing? How is the swooshing in your ear? Mine is really loud to night! Hope your week is going well!! 🙂
@iagrrl, I do know your cousin Jean! What a small world? How are you doing??
@iagrrl I do know your cousin Jean! What a small world. So how are you doing??
I am super busy, we move in a month! Trying to pace myself, not lift anything super heavy, but it is hard to slow down. Yes, I am a type A to the core. Most of the time I don’t hear the whooshing in my ear during the day, I hear it if I get my heart rate up or get upset. At night, yes I hear it when I first lay down but after that it doesn’t bother me.
I was told not to lift anything greater than 10 pounds, I am glad you pointed out not lifting anything heavy. It easy to forget when you get busy in an activity. Let me know how the moving goes!! I will take in some extra naps for you :).
This week Cleveland Clinic will be hosting their 2nd international symposium on FMD and it will include SCAD. I was able to attend the first symposium but will miss this one. I am happy to report that patients have been invited to participate in a patient panel on advocacy! We are making strides in this disease. For more information: https://my.clevelandclinic.org/departments/heart/medical-professionals/educational-opportunities/fmd-symposium#meeting-program-tab
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