Fibromuscular Dysplasia: How Social Media Is Changing the Landscape of Rare Diseases

On this episode of Inside the Texas Heart Studio, Dr. Stephanie Coulter sits down with Dr. Jeffrey Olin to discuss, "Fibromuscular Dysplasia: The Rare Disease That Isn’t."

This episode explores how social media has transformed the way patients with rare diseases, like fibromuscular dysplasia, find specialists and connect with others facing similar challenges. Dr. Jeffrey Olin, is the Director of Vascular Medicine and the Vascular Diagnostic Laboratory at the Icahn School of Medicine at Mount Sinai.

Dr. Olin discusses:

• His journey into researching fibromuscular dysplasia, a rare vascular disease.
• The importance of curiosity and perseverance in medical practice.
• The power of social media in raising awareness and empowering patients.
• How social media has transformed patient referrals for uncommon diseases.
• The need for responsible social media use by medical professionals.
• The broader impact of research on fibromuscular dysplasia on understanding other women's health issues.

For more information on the FMD Registry visit texasheart.org/fmd

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🔗 Watch Dr. Olin’s Grand Rounds 

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Chapters

• 0:18 How Dr. Olin Became Interested in Fibromuscular Dysplasia
• 3:15 The Role of Social Media in Fibromuscular Dysplasia Awareness
• 4:39 The Impact of Dr. Olin's Work on Fibromuscular Dysplasia and Other Diseases

Transcript

0:00

Hi, thank you for joining us today in the Texas Heart Institute Studio. I have the very sincere pleasure of being with Dr. Jeffrey Olin who is our guest speaker for Grand rounds today and gave a fabulous talk on the disease of fibromuscular dysplasia, which is not rare Dr. Olin heads the vascular Lab at Mount Sinai and as a full Professor actually trained in Nephrology, which I was so shocked to learn and then studied vascular medicine and became enamored with kind of rare vascular diseases. How did that begin Dr. Owen? That's a good question. It is a good question and it's nothing I planned. I will tell you that when I was at the Cleveland Clinic many years ago. I remember seeing people with rare diseases one of them being Burgers disease. Thrombo angiotic obliterans which interestingly was first described at Mount Sinai Hospital in New York City by Leo Berger, but I also saw a woman a young woman who had a stroke from fibromuscular dysplasia, and I remember the effects that it had on her body and on her psychological Outlook and I became interested in after that started writing papers on it and then people started coming right? I'm super interested as a trainee of young doctors you and I both share that passion and how do you how do you select for the phenotype of the inquisitive physician that will because I love that. I personally really love that and I love to take the weird. Opportunity to further the career of somebody who wants to do something. That's kind of Against the Grain and we need people outside of the box thinking. Yeah the needle that's a hard question to answer I try to stress. a very important point and that is never give up on trying to figure out what's going on. In other words. Don't be superficial, but I said there's never a day. I don't look something up. And I try to encourage that in the trainees and some get it and others don't and it's either you have it or you don't have it. All right you Know buddy under so much pressure and demand to produce in some regard that it's hard to give people the time to chase their passions. I'm hopeful that with all the media attention that we're providing to your rare disease and your very important interest into these diseases that we're changing the way people look at medicine and how How people look at their own vascular health and yeah, it's it's not just what we're doing. It's what the patients are doing. For example in my talk today. I talked about Pam mace. I mean she's a registered nurse. None of this would have happened without her she has Really just constantly on her off time try to increase awareness among Physicians among patients give advice her phone is always open to anybody who wants to call her. There's only so much that we have been able to do but when the patients get involved, that's when things really move forward. So how us this Facebook networking amongst patients impacted Your research and your clinical practice? Well, I'll make it a little more generalized than Facebook how has social media affected it and I think what happens now. patients who are interested in their own health go online and they try to find someone who's an expert in the condition. They think they have they may look at lectures on YouTube. They may go on Facebook. They may go on Twitter. There's a million different ways. They can do it if they have the means to travel to a center where there's an expert they do it. If they don't have the means then they utilize things like the fiber muscular dysplasia Society of America to help with advice and who they might see around their area. Social media has changed everything in the way patients are referred to us for unusual diseases. I have to say that was the biggest surprise to me because I I don't always ask my patients. How did you find me? But when I learned that the way that many people self-referred themselves was through you know social media. So we have to be good about our social media. Yeah, absolutely responsible. That's partly what this is about and we're just really trying to boost the awareness in our local area. the word out pretty well around here and the Physicians here are becoming quite astute about it and our You know. Responsibly patient about looking at angiography and when to intervene think your Works made a big impact on you know, People's Health. Yeah, it's not it's not just that we're going to increase Awareness on fiber muscular dysplasia by having an interest in that you're going to increase awareness of a whole host of other diseases that affects women that You'll become experts in just because of an interest in fibromuscular dysplasia. I didn't go into this with the idea of being an expert on carotid dissections or vertebral dissections. It just happened that way. Yeah, I could see this I could also see how I'm going to be needing to take an extra course on reading CTA says, you know that's not part of my basic training, but certainly we look at my my pockets today or filled with images to be reviewed right and having the right kind of people around you is certainly you need to be in a big Center that has all the people to help you to do your job. I assume I agree, so I really just want to thank you for raising the awareness and for coming and spending your time here with us in Texas today. Actually you elevated what we do and we thank you sincerely for your efforts. It's been a pleasure and I hope Houston wins tonight.