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Wednesday, May 18, 2011

Fibromuscular Dysplasia Online Support Through the Vascular Disease Foundation

Midwest Women's Vascular Advocates is excited to announce a new online support group for those affected by Fibromuscular Dysplasia.  The Vascular Disease Foundation was kind  enough to set up this online community through Inspire.  This is a safe place for you, your family and friends to support and learn from each other. Please come share your experiences.

Click on link below to join:

We hope you pass this along!

Warmest Regards,

Jennifer Moreen & Kari Ulrich RN
Founders- Midwest Women's Vascular Advocates

For more information on the Vascular Disease Foundation:

Vascular Disease Foundation –
P.A.D. Coalition -
Venous Disease Coalition -

Great things happening in Paris regarding Fibromuscular Dysplasia!

Reasearch Objectives: Including Fibromuscular Dysplasia

 " We are now testing the screening value of the triple signal for the positive diagnosis of fibromuscular dysplasia, by comparison with tomodensitometry in a prospective trial and we participate in the constitution of a large national registry of patients with fibromuscular dysplasia : the PROFILE Study is a multicenter cohort study assessing the vascular, renal and genetic aspects of PROgression in FIbromuscular Lesions." - 
Pathophysiology and Pharmacology od Large Arteries




(Paris-Centre de recherche Cardiovasculaire)

Take a moment to review this link: 

Tuesday, May 17, 2011

Great FMD webchat from Cleveland Clinic!

Cleveland_Clinic_Host: Today's Online Health Chat "Fibromuscular Dysplasia" with Dr. Heather Gornik and Pam Mace will begin in 5 minutes at 12:00pm(EST). Please submit your questions by typing in the box below and then click "Ask a question".
Cleveland_Clinic_Host: Welcome to our "Fibromuscular Dysplasia" online health chat with Heather Gornik, MD and Pam Mace. They will be answering a variety of questions on the topic. We are very excited to have them here today!

Cleveland_Clinic_Host: Thank you for joining us, let's begin with the questions
Pam_Mace_RN: Welcome everyone - it is nice to be here today.
Dr__Heather_Gornik: Thanks for joining us today.
SnowWhite: The doctors told me to stay at home for 6 weeks after my carotid arteries dissected. Since 2 weeks I have been working part-time and my doctor and I are currently trying to find the right time to restart working full time. Do you have any experience, how long dissected patients should rest before restarting their usual job with full power? I am working in an office, spending my time in front of a computer – no heavy load to carry etc…
Dr__Heather_Gornik: The time to return to work for a patient with a dissection depends on a number of factors, including the extent of the dissection, your neurological symptoms (such as whether or not you had a stroke), and also if you are having severe pain and needing pain medications, so each patient is different.
SnowWhite: Do you know any experts or clinics in Germany or Europe that are focusing on FMD and that you could recommend for further treatment?
Dr__Heather_Gornik: Dear SnowWhite. These are really terrific questions. I am afraid I do not know of any specialists in Germany who are focused on FMD, but I know there is a very active group in France at the Paris Descartes University who is focused on this disorder (led by Dr. Pierre-Francois Plouin). I wish you the best of luck.
Pam_Mace_RN: I do not know of any doctors or clinics. I would be happy to try to introduce you to other patients in Europe to see who their doctors are.
Pam_Mace_RN: There are several doctors in Europe participating in research and Dr. Olin and I have been in contact with them.
Pam_Mace_RN: I have reached out for them to find out who sees patients clinically but have not received a response yet.
SnowWhite: Could you please give me any advice concerning the kind of checks and the time intervals I should perform in future? How often do I have to have a look at my carotid arteries? Do I need MRI every time or is ultrasound sufficient? Should I permanently check other organs as well (kidneys, heart)?
Dr__Heather_Gornik: The frequency of surveillance studies to reassess carotid FMD also depends on a number of things, such as whether you have had a dissection or have a pseudoaneurysm or aneurysm. In general, it is reasonable for carotid FMD patients to have a repeat imaging test every 6 to 12 months once their symptoms are stable. The type of test MRI vs. ultrasound depends on the local experience of the imaging faciliteis in your area with FMD as well as whether or not your disease can be imaged by the ultrasound probe.
Dr__Heather_Gornik: In terms of assessing other vessels for a patient with carotid FMD, it would be reasonable to check for renal FMD in any patient with carotid FMD. I do not routinely check any cardiac tests. I may recommend assessment of the arteries to the legs if a patient has bruits in the legs, abnormal pulses, or pains in the legs with walking.
Dietz08: My son Mason is 6 mos old and has been diagnosed with FMD. He underwent surgery for a "coarctation of the aorta when he was 10 days old. He appears to be thriving and on track as far as growth/strength development, yet doctors we have seen on the west coast are not familiar with FMD and have pretty much thrown their hands up in the air as far as recommended treatment due to his condition and age. We are desperately trying to have him seen by experts at the Cleveland clinic as they are our only hope. What if anything can be done to treat Mason's FMD at such an early age. I understand that you would need to actually see him to diagnose his condition but generally speaking what type of restrictions would FMD have on his ability to live a normal life. Thank you for your time and we hope to see you in person in the near future. respectfully submitted, Danielle and Ryan Gussie
Dr__Heather_Gornik: Dear Danielle and Ryan. We would be pleased to arrange for a multidisciplinary care team here to evaluate your son. To clarify, I am not a pediatrician, but I am occasionally asked to provide my input on the care of a child with FMD as director of the FMD program. We would need to be sure that your son is evaluated by a team of pediatric experts who are familiar with FMD. Each patient with FMD, including each child with FMD, is different. I will say that pediatric FMD is a very different variant of the condition that adult type FMD. Narrowings in arteries are more common than tears and the lesions are generally not the sting of beads type. Involvement of the aorta is unncomon in FMD, but has been reported in children.
Pam_Mace_RN: Dear Danielle I can introduce you to other parents of children with FMD. I think this would be a great resource for you. We have one parent who responds to most of our parents who I could introduce you to. You can contact me at .
SnowWhite: Somewhere I heard about the possibility of developing aneurisms when your carotid arteries were affected. How can I prevent such implications?
Dr__Heather_Gornik: There is a small risk (probably <15%) of a patient with carotid FMD having a brain aneurysm. These are aneurysms that have not "just developed", but have probably been present for quite some time. Because of this risk, we recommend that all of our carotid FMD patients have an imaging study of the arteries inside the brain, either a CTA or an MRA.
SnowWhite: What kind of sports can somebody suffering from FMD still perform? My doctors told me that a new dissection could occur when jumping. Therefore I do not seem to have many choices except swimming and walking…What are your experiences concerning excercising with FMD at the carotid arteries?
Dr__Heather_Gornik: We don't know for sure or have any extensive scientific evidence on the risk of certain sports for FMD patients. The concerns it that extreme activities and also sudden, jerking, or stop and go motions of the neck may predispose to dissection. This is based on some case reports in the medical literature and experiences of a few patients. In general, for my carotid FMD patients, I recommend against: weight lifting or weight training (puts stress on arteries), contact sports (rugby, American football), sky diving, scuba diving, down-hill skiing unless truly expert. In general, we also recommend against roller coaster or thrill rides at the amusement park, again because of the "jerking" motions of the head.
Dr__Heather_Gornik: That being said, gentle aerobic exercise, walking, cycling, jogging and yoga and pilates are fine for most FMD patients.
Dr__Heather_Gornik: As always with FMD, each patient is unique, so please consult with your doctor before beginning an exercise program.
biggieroy: Is it common for FMD patients to have other congenital/vascular anomalies? I was diagnosed with FMD 6 years ago, as well as with a venous angioma, 2 cavernous angiomas, evidence of prior stroke and TIA's (all brain anomolies) as well as a PFO and congenital mitral valve prolapse and hypercoagability. The current neurologist I am seeing has admitted he really does not know how to treat me (my original neurologist moved away. Is there a syndrome that explains these numerous anomolies and is this a common occurrence (numerous anomolies associated with FMD?)
Dr__Heather_Gornik: Dear Biggieroy. Yes, we do see some overlap with FMD and other congenital abnormalities, but some of the things you mention may not be directly related to FMD. As always, it is key that you be evaluated by someone who is familiar with FMD. It may also be helpful in your case to image the aorta to be sure there is no aortic pathologies.
Pam_Mace_RN: I agree. I am familiar with other FMD patients who have a history of PFO and MVP. But, to date there has been no direct correlation with FMD, if any.
Zimbabe: I am sorry I missed the conference this year, I would like to know the symptoms of the Coronary FMD?? I have FMD in my Ext Iliacs, Carotid, and Renals. And now have to take Metoprolol for 2 different arrhythmias.... my sence is that its all connected, but my Cardiologist is not sure.
Dr__Heather_Gornik: Dear Zimbabe. Dr. Christopher Buller gave a terrific talk. He reported on a group of patients with heart attack who were found to have tears in the coronary arteries and FMD lesion in the coronary arteries and also other vessels. He is continuing his research in this area. A few key points of his talk were that the primary presentation was heart attack and not chronic chest pain or palpitations. He also did not recommend screening coronary tests for FMD patients. He also shared that the best mangement of coronary FMD seems to be a conservative one. So stay tuned for more data in this arena. I will say that we follow about 200 FMD patients, and only a small number (less than 10)have had coronary issues. Stay tuned for more data from Dr. Buller.
Pam_Mace_RN: Dr. Buller is interested in collaborating with FMDSA.
Pam_Mace_RN: At the meeting, Dr. Buller's talk was very well received among the patients. There were only a few patients who attended that had coronary FMD.
tubs: Good Day. I am a 44 year old female diagnosed with dilated cardiomyopathy and FMD of the right renal artery along with hypertension. I had a right renal angioplasty May 2009. I am currently taking coreg 12.5mg twice a day, spironolactone12.5 mg once per day, baby asa, multivitamin. Are these drugs the best choices for me? I also had a annual physical exam with my family practice doctor and she was not sure what type of follow up I should have with my FMD. Also I have 9 children. 6 boys and 3 girls. I am wondering if I need to do anything with them or have them checked for FMD? Also I had my carotids scanned and they were ok. I experience alot of headaches and for about six months lip and tongue numbness, intermittent. My carotid scan was May of 2009. Should I have that reexamined? I had an appointment at your facility but my insurance will not cover it. If you think I need to come there I will.
Dr__Heather_Gornik: Dear Tubs: We generally recommend an Ace inhibitor or an Angiotensin Receptor Blocker for our FMD patients, and you may want to ask your cardiologist about this. We would recommend regular blood pressure checks and periodic blood tests of renal function and an ultrasound of your kidney arteries every 6-12 months after an angioplasty.
Dr__Heather_Gornik: As for your kids, most important to have them screened for high blood pressure by their pediatrician (and the normal for each child is based on their age, sex, and height not the same 140/90 we use for all adults). If they have high blood pressure at a young age, then would be appropriate to test for FMD, but the very good news is that FMD generally does not run in families and in prior studies <15% of family members of affected FMD patients have FMD, so odds are you kids will not have this disorder. Good luck with your 9 kids… busy lady!
Pam_Mace_RN: If you are having persistent neurological symptoms, you may need reassessment. I might suggest that you see a neurologist since you are concerned about your carotid arteries and symptoms.
LRussell: Is there any new information since the last chat regarding correlation with FMD & MALS (or celiac artery compression)?
Dr__Heather_Gornik: One of my fellows, Dr. Keith Swanson, has just completed a project looking at this issue. In our initial analysis, it did not seem that MALC was more common in FMD patients compared to patients who have other types of vascular disease. But - stay tuned for more data. Keith has just returned to North Dakota but he plans on writing up the project soon. I will tell him you are waiting on the data!
LRussell: Could the Registry use samples from people living with FMDers to rule out/rule in environmental factors?
Dr__Heather_Gornik: Dear LRussell, we need to clarify one thing about your question. There are two major research projects ongoing in collaboration with FMDSA, One is the patient registry that is a questionnaire about FMD patients, their medical history, symptoms and outcomes.
Dr__Heather_Gornik: The second project that I am working on involves a blood sample collection for a bio-repository. This is a project being done at Cleveland Clinic, Mayo Clinic and with a collection at the FMDSA meeting.
Dr__Heather_Gornik: To clarify the registry does not involve a blood test. I think it is a neat idea to collect samples from unaffected people close to FMD patients and we are collecting samples from family members for the bio-repository.
Pam_Mace_RN: At this time we have not looked into the possible environmental involvement and how it may affect FMD.
Zimbabe: Thank you so much for your time
Pam_Mace_RN: Thank you for comment.
Sharon: I was diagnosed in "94 with FMD of both carotids. 70-80%. I am asymptomatic but have high blood pressure that is being treated. Am I safe to exercise with the FMD under these conditions? I am 62 years old.
Dr__Heather_Gornik: Dear Sharon, first of all the fact that you are without symptoms is important and terrific. I want to make sure that you know that the % stenosis categories that are put on an ultrasound report may not be entirely accurate for FMD patients - they are more designed for plaque blocking the carotid arteries.
Dr__Heather_Gornik: As for exercise, please see my answer to snow white's questions above. Gentle aerobic exercise, walking, cycling, swimming is fine in most cases as long as your blood pressure is well controlled.
Cleveland_Clinic_Host: For those just joining, we are chatting with Dr. Gornik and Pam Mace, who are taking your questions about fibromuscular dysplasia. If you would like to review what already has been discussed, please click on the 'Transcript' button above. If you would like to submit a question, please type in the text box below and click 'Ask'
Pam_Mace_RN: I agree with Dr. Gornik's answer. We have many members who still exercise.
Stephanie: Hi Dr. Gornik and Pam, I missed the FMD conference this year... are there some highlights that you can share?
Pam_Mace_RN: We have added some highlights on facebook. The conference was very successful. It was our largest yet. Here is a direct link -
Dr__Heather_Gornik: Hi Stephanie. I thought the conference was awesome and congratulate Pam Mace and her team for organizing it. For me, the highlights were Dr. Olin's review of the initial data from the FMD registry presented at the ACC meeting and the talks on neuro-intervention and coronary FMD.
LRussell: Are there any particular medications you would (generally speaking) recommend for patient w/Carotid FMD and uncontrolled headaches? We feel like we've tried everything, even nerve blocks for suspected occipital neuralgia
Dr__Heather_Gornik: At this point, I would be sure your neuro-imaging is up to date and that you don't have any carotid dissection or pseudo aneurysm or brain aneurysm.
Dr__Heather_Gornik: I have been working closely our neurology group and our multi-disciplinary headache program for patients such as yourself with severe headaches.
Tricia: What is the most effective way to test for FMD in the coronary artery? I have FMD in the right renal artery, I was just diagnosed in February, and shortly after that had my first angioplasty. My renal arteries have again narrowed and I am scheduled for another angio next week. I have been having shortness of breath. I just read on line that an angiogram is not the most accurate way to detect blockage or whatever may be going on.
Dr__Heather_Gornik: Dear Tricia - I know there is a lot of buzz about coronary FMD after Dr. Buller's talk.  But, most patients with renal FMD are not known to have coronary involvement. If you are truly having exertional shortness of breath, I do think a thorough evaluation by a cardiologist is recommended. He or she may start with a more functional test such as a stress echocardiogram. I am not routinely looking for coronary FMD in my renal, carotid or multivessel FMD patients.
tubs: thankyou for your time. I also weight lift without any symptoms or problems is that ok?
Dr__Heather_Gornik: Dear tubs, sorry - but I would strongly advise against weight training for patients with significant FMD. Resistence bands or very light weights are fine - but please no bench presses or squats or hard core weights training.
Pam_Mace_RN: I always recommend checking with your doctor who is familiar with your specific FMD - who knows the arteries affected and severity of disease
SnowWhite: Are there any difficulties in travelling by airplane? Do you usually recommend to avoid flying when a thrombosis occurred in a carotid artery?
Dr__Heather_Gornik: I see no reason why an FMD patient who is feeling well and clinically stable cannot travel by airplane. Even patients who previously had a carotid dissection or TIA or stroke can be a passenger on a plane, as long as they are compliant with their medications and clinically stable to travel from their physicians' perspectives.
rkm1948: Dear Pam and Dr. Gornick, First I'd like to thank you for a wonderful and very informative weekend in Cleveland! My grandson, Hayden, who is 13 has renal, carotid, vertebral, middle cerebral, subclavian and other cranial arteries with FMD. We have an appt with you (Dr. Gornick) at the FMD clinic the end of June. Should he be seen by the multidisciplinary pediatric team while there? Also, I am concerned about Middle School PE. Should he be playing basketball, jogging a mile, things like that? Thank you. Rosann
Dr__Heather_Gornik: Dear Rosann - all good questions and yes - your grandson would be seen by pediatric subspecialists as well as myself. My nurse Kathy Petrarca, who you may have met at the conference, will be in touch with you within the next few weeks to plan your grandchild's visit.
Dr__Heather_Gornik: As for exercise and PE class - that will be on our list of topics to address when Hayden is seen.
Sharon: How do I get on the patient registry with the questionnaire about FMD patients?
Pam_Mace_RN: To participate in the patient registry, you have to be seen at one of the participating centers. They are listed on the FMDSA website.
Dr__Heather_Gornik: We offer all the patients who come to the FMD clinic the opportunity to participate in the FMD registry if they so choose.
tubs: Do you know of any specialists in the upper peninsula of michigan who work with fmd patients?
Pam_Mace_RN: A lot of patients who live in upper Michigan go to Mayo Clinic or University of Michigan.
Dr__Heather_Gornik: Of course we see patients from all over the world with FMD.
Ghennet: Dear Dr. Gornik, first of all thank you so much for your answers in December 2010.It helped me moraly a lot to be in contact with someone who deals with fmd.Here in Germany we still are the only ones and the doctor of my now 7 year old daughter, who has taken care of her the last year very well (and still is), is overchallenged now.She had an MRT done a few wekks ago and they found, that besides her already existing affected renal arterie, she has now slight changes in her brain arteries.Not only one spot, but some.I need to know, what can we do to prevent more changing/narrowing?Any sports she should avoid? Traveling by airplane?Food?
Dr__Heather_Gornik: Dear Ghennet. Thanks for logging in again today. I would first of all be certain that these were really new narrowings --- sometimes in FMD blockages have been present for some time, but because an imaging test was not previously done they were not identified. Please see my answer to SnowWhite regarding sports. This can be particularly challenging in children, but we would recommend against contact sports in general. Her specific exercise restrictions would also highly depend on how well her blood pressure is controlled. For children with FMD, some good news is that tears of arteries (dissection) seems to be less common, though problems with narrowing can be more significant.
FMDrenal55: I am wondering what the chances of acquiring FMD in other arteries is if I have renal FMD now
Dr__Heather_Gornik: Dear FMDrenal - I am glad you asked that question. It is quite possible that a patient with renal FMD has FMD in another vascular bed, but it is not really acquiring new FMD but a matter of finding the FMD that is already there.
Dr__Heather_Gornik: A large percentage of our patients have FMD in more than one spot.
Dr__Heather_Gornik: For a patient with renal FMD, I would do a thorough physical exam with attention to the blood vessels and at minimum a carotid ultrasound. If there was evidence of carotid FMD on ultrasound or another test, I would recommend looking at the brain arteries as well.
Pam_Mace_RN: Personally, I have FMD in my carotid and renal arteries and know that a lot of our members have multiple vascular areas affected.
Ghennet: Her doctor tells me, that in Germany patients are not treated prventic to "strokes", but only when something has already happened, then they start treatment. How is that in the USA? Is there nothing we could do to prevent more narroving? How often should we do an MRT to see changes. Her renal arterie had changed within half a year from proximatly 20% narrowing to 70 %.That is so fast I think.
Dr__Heather_Gornik: Dear Ghennet. Your child's neurologist/physician is absolutely correct. For FMD in particular, we do not open blockages just because a certain percentage narrowing has been reached. If a patient is not having symptoms from the blockages and has good overall flow to the brain, we would not recommend any procedure to open the blockages. This is very different than a condition of older adults called atherosclerosis or plaque of the carotid arteries where we would consider opening the blockages with stenting or surgery if they are very severe (such as >70 or 80%) even in a patient without symptoms.
Dr__Heather_Gornik: Again for FMD patients, we do not recommend trying to open narrowings unless there are definite symptoms due to the blockages (such severe high blood pressure and renal blockages or mini stroke or stroke for carotid blockages). It sounds as if your daughter has no symptoms of carotid disease right now, and I am pleased to hear that.
Dr__Heather_Gornik: You might want to ask her doctor if she should be on any medication therapy, such as low dose aspirin.
Tricia: Thank you. I already had a echocardiogram, which they say indicates possible "Pulmonary hypertension" and also a sress test which is abnormal. I was unable to attend the conference, so I am not aware of the Dr. Buller's talk. That's why I am asking, maybe you all have some info you could pass along. My main question is, what is the most effective way in detecting FMD in the coronary artery? Thank you!!
Dr__Heather_Gornik: The most affective way to diagnose coronary FMD would be an angiogram, also called a cardiac catheterization. But, that being said Tricia, I don't think your symptoms sound like coronary FMD at all. I am assuming that you are under the care of a cardiologist and if not, I would definitely recommend that you see one. Good luck to you.
scottie: Thank you for this open time to submit questions. What is the difference between a pseudoaneurysm and an aneurysm and what are the implications of each?
Dr__Heather_Gornik: Great question Scottie. A psuedo aneurysm is an outpouching in a blood vessel that occurs after a dissection or tear in that artery.
Dr__Heather_Gornik: This is different than a true aneurysm which is an outpouching involving all layers of the blood vessel wall and generally occurring in an artery that has never had a dissection.
Dr__Heather_Gornik: True aneurysms in particular, when they are large and located in the brain or the aorta increase the risk that they could rupture.
Cleveland_Clinic_Host: We have approximately 10 minutes left in the chat. If you would like to submit a question, do so now. If you have additional questions after the chat, please use our contact link to submit your questions or go to to chat online with a heart and vascular nurse.
scottie: Also- are you finding that most of your patients with FMD are remaining stable? If so, would this suggest that once diagnosis is made and risk factors managed, there is a good outlook?
Dr__Heather_Gornik: Dear Scottie - we are learning more about FMD prognosis with the patient registry. That being said, I am happy to report that I personally had a patient pass away from complications of FMD and even among patients of mine who have had a dissection, the repeat dissection rate seems to be low.
Dr__Heather_Gornik: That being said FMD can cause a lot of symptoms and morbidity in patients such as swishing in ears, bad headaches, high blood pressure and even stroke or dissections in some patients. It just doesn't seem to be shortening the lifespan.
Dr__Heather_Gornik: Oops - so sorry - just read the typing I have NEVER had a patient who died from FMD.
Pam_Mace_RN: I agree with Dr. Gornik - I think it is very important to have a doctor who is knowledgeable in FMD to fully evaluate patients for the extent of their FMD and need for treatment.
Pam_Mace_RN: The majority of patients who contact FMDSA seem to live very normal lives and have a good quality of life.
SnowWhite: 2 months ago, I was diagnosed FMD with my left carotid closed entirely and the right one at 10% usual performance. I still hear swooshing sounds in my ears from time to time - when temperatures are high or when awaking from a nightmare. Is hearing those sounds ok? Will it remain?
Pam_Mace_RN: I was diagnosed 11 years ago and still have the swishing noise. It is not as bad as when I was initially diagnosed but it is triggered with lack of sleep. Sometimes it is just a change in position that help make it stop at night for me - and resting so that it is not brought on.
Dr__Heather_Gornik: Dear SnowWhite - as Dr. Olin shared on Saturday at the FMDSA meeting swooshing in the ears or pulsitile tinnitus is one of the most common symptoms in our FMD patients.
Dr__Heather_Gornik: Sometimes an ENT specialist or audiologist can be helpful in ruling out other conditions and coming up with some strategies for dealing with this annoying symptom.
zprewett: I am a 28-year old, male patient diagnosed with severe hypertension at 24. My BP is well controlled with meds. I have a narrowing in my left renal artery and it looks to be more along the lines of intimal due to a single, smooth narrowing on imaging. They tried to open the artery with angioplasty but were unsuccessful -- dr said they could not budge the narrowing. Is this common with FMD?
Dr__Heather_Gornik: Dear zprewett - intimal disease occurs in about 5 - 10 % of FMD patients and your presentation would be pretty common. I am afraid I do not know the specifics of your case but I would want to be sure that the attempted angioplasty was done by an operator highly experienced in FMD.
Pam_Mace_RN: I think it is important that your physician is very familiar with FMD and performing a necessary procedure - as I have seen in the past with other patients or members that this can make a difference.
scottie: Thanks for that clarification on morbidity and mortality! So- are pseudoaneurysms generally more stable than aneurysms?
Dr__Heather_Gornik: I don't have specific data on that. Generally my sense is yes.
LRussell: Re: uncontrolled headaches - history of mult dissections, a saccular aneurysm (very small) on one carotid, evidence of verterbral FMD as well, history of TIAs
Pam_Mace_RN: I would seek a second opinion and be seen somewhere very familiar with FMD, such as Cleveland Clinic.
scottie: I am on B Blocker (atenolol) for my bp and the headaches and it seems to work well. It was also chosen to reduce the pulse pressure on the tight carotid stenosis and dissections-so my pulse rate tends to be upper 40s to upper 50s. Would you advise an ACE also? is the evidence for remoddelling stronger now?
Dr__Heather_Gornik: If blood pressure is controlled and you do not have renal FMD - no strong evidence to indicate ACE inhibitor or ARB at this time.
zprewett: Does FMDSA have a list of physicians who specialize in FMD?
Pam_Mace_RN: Yes we do have a list of physicians throughout the United States with an interest in FMD and the Centers participating in the patient registry seem to have more experience than other physicians and those centers are listed on the website. Please feel free to contact us for a physician in your area.
Tricia: Thank you for answering my question Dr. Gornik.
Dr__Heather_Gornik: Of course Tricia - best of luck to you.
Cleveland_Clinic_Host: I'm sorry to say that our time with Dr. Gornik and Pam is now over. Thank you again for taking the time to answer our questions about fibromuscular dysplasia.
Cleveland_Clinic_Host: If you have additional questions, please go to to chat online with a heart and vascular nurse
Dr__Heather_Gornik: I really enjoyed the substantive questions today. Thanks for joining us.
Pam_Mace_RN: It was nice seeing everyone at the annual meeting. Please visit our website. thank you
Dr__Heather_Gornik: I would like to say a final word of thanks to Pam Mace and FMDSA for all they do to educate and support patients and providers regarding FMD.

Monday, May 16, 2011

Less Common Vascular Disease by Drs. Lau and Olin, including Fibromuscular Dysplasia

CXVascular - Interventional News - Features - Interventionalists should know about the less common vascular diseases

Please take a moment to read Interventionalists should know about the less common vascular diseases written by:
Joe F Lau and Jeffrey W Olin

"Physicians who perform percutaneous endovascular procedures encounter a multitude of vascular diseases that may masquerade as obstructive atherosclerotic arterial disease. While atherosclerosis is clearly the most common condition seen, complex inflammatory, genetic or structural processes may either not be amenable to an endovascular approach or actually be harmful and thus lead to outcomes that are not satisfactory"

This is important information for every FMD patient to share with their team of doctors.

Carotid FMD
***Important- screen for brain aneurysm****

Saturday, May 14, 2011

South African Teen Needs Care for Rare Vascular Disease: Fibromuscular Dysplasia (FMD)

Ashleigh Botha

At age 16 Ashleigh Botha traveled across the globe to receive treatment at the Cleveland Clinic for a rare and progressive form of Fibromuscular Dysplasia. For several months she was in a strange country with her mother and close friend Julian living out of hotel room recovering from a renal bypass. Her father needed to stay back in South Africa during that time to take care of Ashleigh's siblings and to continue to raise funds for Ashleigh's care. Now two years later  Ashleigh continues her battle with FMD.  I met Ashleigh and her Family through FaceBook, at the time they had never spoke to anyone who had FMD, and they did not know treatment was available. Ashleigh was the first case of FMD South African doctors had ever encountered. One could honestly say Health Care in Social Media has saved Ashleigh's life. Today, two years later I am asking social media to make a difference in this young girls life again.  Ashleigh is the bravest, kindest soul I have ever met. Her humble and gracious spirit remains despite the set backs she has faced at such a young age. Please say an extra prayer tonight for the Botha Family.

Thank you,  Kari Ulrich

Please take a moment to meet Ashleigh through her website:
Facebook: Ashleigh Botha Support and Prayer Group

I would like to share with you a letter from the Botha family:

We are VERY DESPERATELY trying to raise money, AS FAST AS POSSIBLE, for Ashleigh to return to U.S.A. for major surgery to bypass diseased arteries. ASHLEIGH BOTHA from SOUTH AFRICA, has INTIMAL FIBROMUSCULAR DYSPLASIA which is a very RARE DISEASE of thearteries. Intimal FMD is a very aggressive and progressive form of FMD which causes her arteries to grow closed on the inside with a long smooth narrowing, and if not treated, close. This limits blood flow to her major organs, causing loss of function and other complications. Cleveland Clinic in Ohio, USA has a specialised FMD unit, where Ashleigh went in 2009 for an aorta/renal artery bypass. She was referred to as a most unusual and unique case, where they see patients from around the world. She needs to return urgently to have an aorta/mesenteric artery bypass to restore blood flow to her digestive organs. She also needs her renal/aorta bypass redone, as her vein used ihas dilated to 4 times it's size. Doctors in SA are unable to help much due to the rarity of Intimal FMD. Our medical Aid can only assist us with less than 1/4 of the cost of her treatment, but we have to pay this full amount and claim it back when Ashleigh returns to S.A. 

To donate in U.S.A.:  
Ashleigh Botha Recovery Account 7860881825 
Wells Fargo Bank 
122 East Main Street 
Albert Lea, MN 56007 
or online at

To donate in S.A.: 
Ashleigh Botha Recovery Account 08 500 5436 
Standard Bank Branch - Port Elizabeth 050017

Wednesday, May 4, 2011

Five things Fibromuscular Dysplasia (FMD) is not.....

1. FMD = Fibromuscular Dysplasia is NOT Fibromyalgia.

2. FMD is the acronym for Foot Mouth Disease- Fibromuscular Dysplasia also has the acronym FMD but it is vascular disease not a virus.

3. FMD is not curable but the symptoms are treatable.

4. FMD is not common but it is commonly undiagnosed

5. FMD is not just a description for radiologist to use in their report.  FMD is a disease that needs to be treated and monitored and patients need to know they have the diagnosis.

Please learn what Fibromuscular Dysplasia is... our lives depend on it.