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Thanks so much for the information. I had an Aortic Dissection (41 days in the hospital).That was 20 months ago. It was just discovered a few weeks ago when I became very dizzy that FMD was discovered. My new Cardiologist thinks it may have been the cause of the dissection.

Thank you FMDSA , staff and Prof Kovacic for your years and hours of wonderful work and amazing skills!- we are so fortunate to have such a knowledgeable and conscientious group of people working on this investigation. As a patient with FMD and having had two SCAD's all this work is so encouraging for future patients. Well done and thank you so much :)

Thank you so much for the research, and for doing this meeting! 🤍

If you would like to support the FMDSA with a donation - www.fmdsa.org/donation-form/

Thank you to everyone for their work surrounding FMD research and to Pam Mace and the FMDSA! (Canada)

Thank you FMDSA, events and education like this is why I'm a member ❤️

Shouldn’t these studies have used a control group without FMD? I think what a lot of us are wondering more so is do FMD patients have a higher prevalence of spine disorders than the general healthy public. That would be interesting to know.

Are there any more current studies or information? This is 2024

How can we be a part of Marianne’s research? I was diagnosed with FMD 6 months ago (I am 44) but degenerative spine disease in my 30s. I’ve never had surgery, only injections and physical therapy. But it only seems to help for a short time and then I’m back in severe pain. Doctors seem to want nothing to do with me and one even told me I needed to find a way to deal with the pain. I am convinced my inability to find answers to solutions to my pain has everything to do with my FMD. I don’t have a medical degree but let’s figure this out together! What can we do?

WOW. I am grateful someone just referred me to this video. I have a pseudoaneurysm on the right at C4-6. diagnoseed with FMD of the right carotid artery, I have disections on both sides of the vertebral arteries, and a also hqualify for 4 connective tissue disorders. I have had 2 failed neck surgeries with a corpectomy of C5. I have had 2 shoulder surgeries as well. I am now convinced they are related. I’m in a lot of pain ALL THE TIME. I feel like a walking time bomb………. I’m only 54 years old…….

I have FMD and the back and neck pain too. Bad curving of my neck and stenosis. Seems related to me.

Yes shingles the virus. Yes both ears. Yes multiple infections (20)

I was just found to have the string of beads in my neck and brain. Getting a full body scan soon and I’m curious about how my mother passed from a rare brain stem stroke and if my continuous reoccurrence of shingles on my ears could be related. No one believes me 🥹

Für Ihre wichtigen und interessanten Informationen. Gute Aufklärung. In meinem Fall leider zu spät davon erfahren.

Man könnte das mal auf deutsch übersetzen. Fibromuskuläre lär bedeutet Bindegewebe und Muskeln betreffend und Dysplasie bedeutet Zell und Gewebe Veränderung.

Kann nur hoffen, daß in den nächsten Jahren neuroplastizität fgg fördernde Medikamente entwickelt und zugelassen werden. Mit den bisherigen Methoden funktioniert es leider nicht eine Reha war vollkommen Erfolg los. Nicht die geringste Verbesserung. Hatte eine ACI dissektion mit Media posterior infarkt. Mein Leben ist nun im Eimer. Mit gerade einmal 48 Jahren. Diese angiografie hatte mir etwas genützt. Soetwas wird leider nur gemacht, wenn bereits schlaganfall artig Symptome oder eine Tia aufgetreten sind. Und man műsste erstmal bescheid wissen. Wenn man nichts weiß, dann kann man auch nicht gegensteuern. eine Zeitwert ilige Bindegewebe Schwäche ist mir bekannt seit Anfang 20 ich hatte immer wieder venenfurchen und schwanger schafts Streifen.. kurz vor der dissektion stellte ich fest das der Vit. D SPIEGEL nur 9 nanogram betrug. Ich machte diesen test auf eigene Initiative, weil sich kein Arzt jemals darum gekümmert hat auch in der Klinik nicht. eigentlich müsste es das A & O sein, sonst kann kein Mensch funktionieren.

Es gibt anscheinend einen Zusammenhang mit inadäquaten Vit. D spiegeln

Das hätte ich eher wissen müssen. Nun ist es zu spät hin links gelähmt kan kein Finger und den Arm bewegen habe seit Jahren ein dröhnen wahrgenommen nommen. Nun weiß ich woher das rührt. Diese Untersuchung von der sie berichten ist leider keine vorsorgeuntersuchung. Und wahrscheinlich teuer.

Proficiat Dokter Tom Robberechts met uw zeer heldere uiteenzetting over FMD.

Is high density webbing in the carotid artery considered FMD?

What about perineal cyst?

Thanks for sharing.

Thank you so much for this information. As with Mimi Petersen (below) my FMD (diagnosed in 1990's), is in bilateral renal arteries, with aneurysms. One aneurysm, in 1990's was large enough to be removed at UC/SF...They opened me up, took out left kidney, put it on life support, snipped off the aneurysm and reconnected to common iliac. No problems (to my knowledge) w/exceptio of elevated renin samplings...right renal artery had aneurysm that was stented about 4 years ago...I also have in in carotid arteries. Am being followed by my family Dr who has me scheduled for an abdominal MRI in a couple of weeks...also, have small aneurysm in brain, and a couple more in renal arteries that have remained small, monitored by MRI's (w/contrast) and ultrasounds. When I waas diagnosed, there was NOTHING about FMD...since then, FMDSA and many of us have found each other on internet...Again, I thank you so much for your info!

Great talk, thank you. Had renin sampling when I was 39 and they were off the chart. Embolization attempted. At 50 Renin samplings once again off the charts. Kidney removed. Went from 5 meds to lowest dose of Cozar.

I've had four major strokes and aneurysms in. carotid arteries and currently in early stages of fourth stroke recovery in. four yrs, complete loss now of left arm,hand, fingers, nobody here even doctors don't know abyi about this,was diagnosed last yr by neurologist when I got blue lighted in with stroke. list use of left leg last yr took 6 months to walk with stick and now I'm told nothin they can do to stop my strokes only treat the symptoms. I'm 50 and can't live like this I have permanent brain Damage to various parts of my brain now

I have fmd and had genetic testing for currently known fmd mutation and mine was "negative". Anyone else?

𝕡𝕣𝕠𝕞𝕠𝕤𝕞 😓

I am not a middle-aged white woman. I'm a young woman of color and was diagnosed as having had a SCAD heart attack. I have low cholesterol and no risk factors. I am only 35 and I am half Native American and half Irish. I have never smoked.

I have focal carotid FMD - I have pulsatile tinnitus, fatigue and brain fog. I need more testing and I have an appointment with Dr Olin. I don’t hear much about the fatigue and brain fog symptoms. Do others have these symptoms?

I was recently diagnosed with carotid artery FMD. Happy to see this organization exists.

Hi I’m curious as I first developed symptoms for FMD soon after having a flu vaccination in 2001. I was extremely sick after the vaccination, losing the strength in my left arm and it impeded my ability to walk. My legs would freeze and I’d have to use my hand to physically lift my leg to initiate movement. This went on for about 4 weeks. My blood test showed ganglia cells and I was told that something was attacking my cells. What percentage of people with FMD have had a flu vaccination and has this ever been looked into as having any relation to FMD?

Hi I’m curious as I first developed symptoms for FMD soon after having a flu vaccination in 2001. I was extremely sick after the vaccination, losing the strength in my left arm and it impeded my ability to walk. My legs would freeze and I’d have to use my hand to physically lift my leg to initiate movement. This went on for about 4 weeks. My blood test showed ganglia cells and I was told that something was attacking my cells. What percentage of people with FMD have had a flu vaccination and has this ever been looked into as having any relation to FMD?

Thanks for creating this video for Fibromuscular Dysplasia Awareness month in May.