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"A wake-up call from a young e-patient: 'I need to be heard'”

John2
  • By John2 · Posted yesterday at 3:22 pm
  • Journal · 0 replies
  • From: John Novack, Communications Director, Inspire 4/15/14 Dear members, I am writing to share with you a new guest column in "Scope," the Stanford University School of Medicine's medical blog: "A wake-up ...

Worried about the Future

Chrystal_S
  • By Chrystal_S · New reply yesterday at 10:30 am
  • Discussion in Renal fibromuscular dysplasia · 3 replies
  • I've had high blood pressure since I was about 14 and for a very long time no one could figure out what was causing it. I was diagnosed with renal FMD leading to my left kidney in early 2007 when I was ...

Headaches and numbness in hands

Lilrunnergirl
  • By Lilrunnergirl · New reply April 13, 2014
  • Discussion in Newly diagnosed · 5 replies
  • Are headaches and numbness just something that happen with FMD? All scans show no change so folks cannot explain the headaches and numbness in hands. Has anyone else had those. Feel as though the doctors ...

Angioseal

donstrat
  • By donstrat · New reply April 12, 2014
  • Discussion in Renal fibromuscular dysplasia · 2 replies
  • It has been two days since I had an angiography of my kidneys and leg by Dr Laird at Davis Medical. It turned out I did not need to have an angioplasty of the kidney arteries as the FMD there was mild ...

Newly diagnosed

Laurie01
  • By Laurie01 · New reply April 11, 2014
  • Discussion in Newly diagnosed · 7 replies
  • Hi everyone, I was just diagnosed today with FMD. I had a bad nose bleed in July, 2012 and ended up in the ER for that and they took my blood pressure and it was 300/220 and that started the ball rolling ...

Medic Alert Bracelet

Yellow_Rose
  • By Yellow_Rose · New reply April 10, 2014
  • Discussion in Aneurysms · 11 replies
  • I'm just curious if anyone wears a medic alert bracelet that says you have FMD ...

Multiple dissections

sartim
  • By sartim · New reply April 10, 2014
  • Discussion in Dissections · 1 reply
  • I just had my 10th dissection and learned yesterday that I now have occlusions to my legs b/c of FMD. If you have had multiple dissections, how are you handling it emotionally? I am at my wits' end and ...

Web Chat with CC Dr. Gornik and Pam Mace

onekidneygalinnorcal
  • By onekidneygalinnorcal · Posted April 9, 2014
  • Discussion in Living with fibromuscular dysplasia · 0 replies
  • Hi Everyone. In case you didn't see it on our FB page don't miss the Web Chat tomorrow with Dr. Gornik an Pam Mace. You can send your question in today. Remember if you are not able to make Web Chat a ...

Appealing a denial of a medication from a drug company

FMDJADE
  • By FMDJADE · New reply April 7, 2014
  • Discussion in Living with fibromuscular dysplasia · 3 replies
  • I finally became stable with a blood pressure that for nearly 10 years had spikes, headaches,dizziness,blurred vision, etc. I have had three angioplasties and a right renal stent. Last December I began ...

Dr. Jackie Saw

onekidneygalinnorcal
  • By onekidneygalinnorcal · New reply April 5, 2014
  • Discussion in FMD research · 3 replies
  • Congratulations to Dr Jackie Saw who was successful in obtaining a major grant from the Heart and Stroke Foundation for the Canadian SCAD Study, which is a national registry involving over 17 sites in ...

Coronary FMD

larchelm
  • By larchelm · New reply April 5, 2014
  • Journal · 7 replies
  • I first was diagnosed with FMD in 2012 , bilateral carotid arteries & vertebral arteries. In November 2013 I developed chest pressure & irregular heart beat so I went to the ER. I was told my cardiac ...

WebChat with Dr. Gornik and Pam Mace

onekidneygalinnorcal

Sort of new and VERY confused

KNoi
  • By KNoi · New reply April 4, 2014
  • Discussion in Newly diagnosed · 20 replies
  • Hi Folks, I'm new to this site, this diagnosis, and message boards in general. But here it goes :) I was very lucky in 2012 when on Labor Day I went to the hospital with the worst migraine of my life ...

FMD and multiple miscarriages

Angel2003461
  • By Angel2003461 · New reply April 4, 2014
  • Discussion in Living with fibromuscular dysplasia · 9 replies
  • Hi I'm a 28 year old female who was diagnosed with FMD of the renal arteries in 2003. I had my left kidney removed and two renal angioplasty completed but failed. I had to undergo a bypass to the right ...

Carotid dissections

Lilrunnergirl
  • By Lilrunnergirl · New reply April 3, 2014
  • Journal · 20 replies
  • Recently diagnosed with bilateral carotid dissections. How long does it take for them to heal and how do you know when the symptoms you are experiencing require an ER visit? Recently back in with severe ...

What Else????

forry63

SCAD

michelle342
  • By michelle342 · New reply April 1, 2014
  • Discussion in Dissections · 4 replies
  • G'day all, I'm new to this site so I'm seeking some answers about the link between SCAD ( spontaneous coronary artery dissection) and Fibromuscular Dysplasia. In 2006 I had a heart attack at the age of ...

FMD Patient Registry has exceeded 1000 Patients!

onekidneygalinnorcal
  • By onekidneygalinnorcal · New reply March 24, 2014
  • Discussion in Living with fibromuscular dysplasia · 5 replies
  • Wow what exciting news! Our patient registry has hit 1000 patients and is growing! Thank you to all of you for your donations and support!! FMDSA funds this registry and together we are making history ...

FMD in renal arteries without high blood pressure

Carolinablue
  • By Carolinablue · New reply March 24, 2014
  • Discussion in Renal fibromuscular dysplasia · 12 replies
  • Hello, I've been diagnosed with carotid FMD, but it was subsequently found in my renal arteries. However, unlike most people, I don't have high blood pressure. I don't know if this is because of the location ...

FMD and mesenteric ischemia (MI)

keller26
  • By keller26 · New reply March 23, 2014
  • Discussion in Other arteries affected · 5 replies
  • I am doing research because my Husband has FMD and mesenteric ischemia (MI). He was diagnosed back in 2005. My husband served during the first gulf war. We are trying to link these diseases to the military ...

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The Fibromuscular Dysplasia Society of America Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the Fibromuscular Dysplasia Society of America, an Inspire trusted partner.