Multiple Sclerosis Is On My Mind Initiative

Artist and patient Lydia Emily Archibald who is a spokesperson and creative director for MS On My Mind, an interactive initiative launched by EMD Serono, discusses her role in the project. She is joined by Dr. Daniel Bandari, M.D., M.S. founder of the Multiple Sclerosis Center of California, who discusses the physical challenges and prevalence associated with MS.

Artist and MS advocate Lydia Emily was born into an activist family passionate about civil rights, social justice and equality. Lydia Emily’s work is infused with a grace parallel to the injustice behind the imagery. She is compelled to speak out not only through powerful paintings and murals, but also by forming and supporting foundations whose work has an impact. Her visual concepts and imagery speak softly to loud troubles in the world.  A prolific and dynamic international artist, Lydia Emily’s work has been featured at gallery shows in Milan, Berlin, Los Angeles, New York, Miami, Washington DC, and San Francisco.

Lydia Emily fought cancer in 2012 and was then diagnosed with multiple sclerosis in 2014. These issues serve as catalysts for not only her art, but also for her social engagement as a speaker. In 2015, she created four large murals spreading a message of hope to those whose lives are touched by MS. These inspirational murals are located in Los Angeles, CA; Houston, TX; Portland, OR; and Louisville, KY. She plans to continue painting the hopeful murals for the MS community around the globe.

Dr. Daniel Bandari is the Medical Director and Founder of the Multiple Sclerosis Center of California & Research Group located in Orange County, California and a Clinical Assistant Professor of Neurology and Neuro-immunology. He is the previous Director of the MS Center at the University of Southern California (USC), Keck School of Medicine.  Dr. Bandari completed his residency in Neurology at Kaiser Permanente Medical Center in Los Angeles and was Chief Resident and recipient of the “Leo Munoz Outstanding Resident Award”. He completed a fellowship in neuro-immunology and MS at USC through a fellowship award from Harvard University Medical School and Brigham & Women’s Hospital in Boston.

He has been recognized as one of the top neurologists in the nation who is specialized in MS. He has been awarded the “Patients’ Choice Award” and “Compassionate Doctor Award” multiple times.  Dr. Bandari is currently a lecturer and educator on local, national, and international levels. He has more than 15 years of experience as a clinician and researcher in MS and is an active member of several prominent advocacy groups and organizations including the American Neurological Association, American Academy of Neurology and National Multiple Sclerosis Society.

Transcript

Neal Howard: Hello and welcome to the program. I’m your host Neal Howard here on Health Professional Radio, thank you for joining us once again. I’m joined today by artist and patient Lydia Emily Archibald, she’s a spokesperson and Creative Director for MS is on my Mind – it’s an interactive initiative launched by EMD Serono. She’s joining us here on the program to talk about her role in that project and she’s joined by Dr. Daniel Bandari, he’s the founder of the Multiple Sclerosis Center of California. He’s going to talk about some physical challenges and some prevalence associated with MS. Welcome to the program and thank you both Lydia and Dr. Bandari.

Dr. Daniel Bandari: Thank you for having us Neal.

Lydia Emily Archibald: Thank you.

Neal: Now Lydia, you’re an artist, are you living with MS or is this something that you have a personal stake in other than being an artist?

Lydia: Yeah, no. I do, I live with Multiple Sclerosis and actually I have a few family members who are also diagnosed with autoimmune diseases so this has been a lifelong thing for me. And as a painter, it’s definitely been very challenging because Multiple Sclerosis has taken my partial eyesight, has taken one of my eyes from me and has taken a lot of mobility from my hands, long term mobility like being able to hold a brush for more than a few minutes at a time. So being an artist, I would imagine it would be impactful for any job but I only have my experience and so it’s yes, as being an artist it’s very difficult as far as a depth perception for my paintings – being able to paint these people’s faces has been very difficult.

Neal: Dr. Bandari, what causes MS and how prevalent is it?

Dr Bandari: So what causes MS is that million-dollar question. We really do not have an answer for it. So what we do believe as scientists is that MS is a multifactorial, three or four factors come together and make the disease prevalent to the susceptible person. And those factors are number one genetic, we all have genes that we inherited from our parents and grandparents and great-grandparents, so MS does have a genetic composition to it. The second part is environmental where we are born and raised the first 15 years of our life also has been shown to have some percentage variation as far as the risk of MS. And the third is our immune responses to the environment, such as infections when we were children, for example, or response to some of the other elements of the immune system. So the consolation of those three things is what causes MS, we believe. Now the prevalence of MS in the United States based on the last figure, it’s been approximately 1 million people live with Multiple Sclerosis in the U.S. and approximately 2.3-2.4 million people in the world have Multiple Sclerosis.

Neal: So would you say that more people are impacted at an earlier age when symptoms first present? Or is it something that you look for later in life or does it even matter?

Dr Bandari: That’s actually a very good question. So the average age of diagnosis of MS is between 20 to 40. Having said that and the expand of an MS age range goes anywhere from 3 year old all the way to 73 year old. So as you can tell anybody at any age could be diagnosed with Multiple Sclerosis but the majority of the impact food portion of the life of the patient is during their adulthood and late adulthood that they’re affected. And this is when they’re graduating from college, when they’re about to get married, when they’re having the job or when they’re having children so that’s one of the biggest elements about MS compared to other neurological disorders such as stroke and Alzheimer’s which affect patients in the later portion of their life. MS actually affects them in the midst of their livelihood and adulthood.

Neal: Lydia, I understand that your situation is a bit more complicated because you were being treated for cancer prior to your MS misdiagnosis. Talk about some of the symptoms and maybe  some of the symptoms that may have been covered up due to your treatment.

Lydia: Oh that’s interesting, I’ve never actually had anybody asked me that before. Yes, I had cancer, clear cell carcinoma and when I was done with my surgery and my radiation from that, it was about a year later that I was diagnosed with Multiple Sclerosis. I actually was diagnosed in the emergency room which is so funny because the poor emergency room doctor, I don’t think he was ready to tell somebody that day. He looked so nervous, I actually felt worse for him than I did for me, that poor guy, but I had gone to the emergency room because they thought I was having a stroke because half of my tongue was numb and because I didn’t fit I think the demographic of somebody who would have a stroke. I was 39 or whatever, I was not overweight, I wasn’t smoking, in the emergency room like nothing matched up with a stroke so that’s when they had found the abnormalities, the lesions on my brain and on my spine. So that, I don’t know that my cancer treatment or diagnosis affected the MS diagnosis at all. They’re just, if anything, I knew how to navigate the medical system much better. I was more of a veteran at that point on how to get answers which is really the most important thing you can do for yourself is get answers.

Dr Bandari:  MS presents with any kind of symptoms basically so we call it the biggest mimicker. However, majority of the patients do present with things such as vision problems, weakness, numbness, heaviness of the leg, balance problem, gait, walking in some cases can affect it later on in life or on sometimes invisible symptoms of MS could be things such as cognitive dysfunction, fatigue. So as you can imagine, any typical daily symptoms that anybody can have can be part of MS. However not to put too much alert in there, majority of those symptoms that most of us wake up in the morning and we have some tingling in our hand goes away in a matter of 10-15 minutes less likely would be MS. However, if someone experienced any of these symptoms that stays with them for a while, in my opinion they should be contacting their physician right away and get evaluated. Now the great thing would be in most cases maybe nothing but at the same time if you end up being Multiple Sclerosis, the best part of it is that if you get diagnosed early and start treatment early, the chances of having a normal quality of life is much higher today.

Neal: Lydia, you’re a spokesperson and a Creative Director for MS on my Mind. Talk about MS on my Mind, what is the goal? What’s it all about?

Lydia: Oh I’m really excited about this. So I was lucky enough to partner with EMD Serono and help put together this msisonmymind.com website and what’s so awesome is that you go to it and you can upload anything you like – a picture of you and your family, some artwork that you’ve done, a sketch on a napkin, drawings. Some people have actually uploaded poetry and writing from their phone and I’m taking those submissions and ultimately the goal is to produce an original piece of art, so an oil painting which is what I do for each of the submissions that we choose. So a man had written in about how his leg was so heavy and how it felt like an anvil as he was walking or a weight and so I made an oil painting of a man sitting in a kind of a classic portraiture style but he has an actual anchor for a leg, a big metal shiny anchor instead of a leg. And a woman had written in about how she misses just doing normal activities like blow drying her hair because the blow dryer is so heavy, so I did a portrait of a woman blow drying her hair with an anvil, things like that. Sometimes when the your loved ones around you, if they don’t have the sickness and MS can have such invisible symptoms to your friends and loved ones. To have this visual of it can really help people understand what you’re going through so I’m really grateful to be able to work on this and I’m so excited about all the submissions we’re getting.

Neal: Well our listeners would like to get some more information about MS. Where can we go online and get that information and learn some more about MS and how it impacts those who are living with it

Lydia: Well for the initiative that I’m doing,  it’s called msisonmymind.com. You can just go straight and upload your images there so that I could see them and for general Multiple Sclerosis information, the doctor?

Dr Bandari: So yes, obviously there are great websites available which have vast information  for your audience to be able to get more insight into MS, National MS Society has a great website, Multiple Sclerosis Association of America is another website, MS Foundation has a good website, MS Center of California, our Center also has a website which has a great deal of information on it as well. So there are a plethora of great resources available to the patients to learn about the disease and also learn how to cope with it.

Neal: Great. Well I thank you both for joining us here on health professional radio today. It’s been a pleasure Lydia and Dr. Bandari, thank you both for taking the time.

Dr Bandari: Thanks for having us, thank you.

Lydia: Thank you.

Neal: You’ve been listening to Health Professional Radio. Transcripts and audio of this program are available at hpr.fm and healthprofessionalradio.com.au and be sure and visit our Affiliate Page when you visit our platform at hpr.fm and healthprofessionalradio.com.au

 

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