Notes from the Georgia Support Group Meeting

Kim Harrison, SRNA Support Group Leader

We had a successful NMOSD-TM-ADEM-MS meeting on February 13, 2016!!  Our group has grown. It is such a good feeling when we get together with our fellow myelitis brothers and sisters. February 13th was an extra special day for us to meet. Senator Donzella James signed Resolution 809 on February 15, 2002, recognizing this date as Transverse Myelitis Awareness Day.

We spent the first half of the meeting catching up with each other. Two new members discovered that they are from the same Georgia town and know a lot of the same people and had not met before! The second half of the meeting we were joined by Anneke Bender, physical therapist from Shepherd Center. She discussed with our group the difference between PT and OT. Anneke demonstrated for us how the smallest movements from a seated position can make a difference in our posture, discussed core strengthening, and even had us doing yoga. She helped us to understand the importance of exercise in our lives and how to manage the fatigue associated with our neuroimmune disorders.

February 29th is rare disease day and we will be at the Georgia State Capitol handing out SRNA flyers. For those interested in joining us, please email SRNA at info@wearesrna.org.

We are looking forward to our March meeting and another great turn out.

Thank you to all who joined us for our February meeting

Chronic Pain from the Perspective of a TM Sufferer: Getting Diagnosed & Lesson One

Barbara Sattler

I was diagnosed with TM in Sept. 2001 at age 53. Both of my legs had some degree of paralysis but that receded after a couple months. At present I still suffer with pain and bowel issues. I’m going to try to explain what I’ve learned about dealing with chronic pain for 15 years.

I am a great supporter and believer in the Transverse Myelitis Association (SRNA) and its mission. I encourage everyone to become a member. You will find a community to help you with the wide variety of issues you face when you become ill with a rare neurological disease. Some of those issues I discuss. Whatever your issue you will find help. I joined shortly after I got TM. I’d never even heard of transverse myelitis. In 2007 Julie Barry and I started a support group in Tucson which still meets today. In 2012, I became a board member of SRNA.

I am not a doctor and have no medical training. I am currently retired. Prior to retirement I was a criminal defense lawyer and then a judge. Since retirement I’ve begun to write novels and am working on my third. In my second novel, Anne Levy’s Last Case, the main character has TM. All the proceeds from my book I donate to SRNA.

Please understand that what worked for me may not work for you and what didn’t work for me may work for you. You should not try anything I suggest or change your medicine or exercise routine without first checking with your doctor.

GETTING DIAGNOSED

I spent a month going from doctor to doctor trying to find out what was causing a myriad of symptoms: legs partially paralyzed, inability to urinate, constipation, feeling like a boa constrictor was squeezing my chest, pain when I bent down.

Unlike some of you, my disease started slowly. In May, I had a strange pain under my breast. I ignored it and it went away. Later I would find out I had a spinal cord lesion at that level. In June I had weird, copious diarrhea. It too went away. In August I had a rash on my abdomen that I thought might be shingles. The end of August, I woke up with the flu which continued for 10 days. During that time, I had numerous diagnostic tests and a visit to the ER, but no one could tell me what was wrong with me. On the day the fever broke, I woke up unable to walk normally. My left leg didn’t work correctly. I had to drag it. My right leg became heavy and numb. At times I felt weird sensations in my legs like pins and needles or electric current. Although I went back to work, I knew something was horribly wrong. I made several visits to my doc, urgent care and various specialists recommended by friends trying to help me find out what was wrong. The specialists either diagnosed me with a condition in their specialty or said they just didn’t know.

On the second or third visit to my primary care doctor, he decided I needed a brain MRI and a visit to a neurologist. I was thrilled when the neurologist said he knew what was wrong and diagnosed me with TM. I was thrilled because I assumed now that the doctor knew the cause it could be fixed. I was wrong. That was in Sept. 2001. Today 15 years later I still have chronic pain, although much less severe.

DEALING WITH PAIN

I began my pain journey with a neurologist. Unlike some people’s experience with doctors, my neurologist, Dr. Valdivia was the best. I am still under his care. Although it was very difficult to find the right meds or strategies, he never gave up, never doubted what I told him, and called me back whenever I left a message. Often these messages were tearful as were our conversations, but he hung in there with me. He always told me I’d get better.

I’d like to tell my story chronologically, but I can’t. I’m not sure when certain things happened. Some of the early months are somewhat a blur. After being diagnosed I had intravenous steroids for 4 days on an out-patient basis. I wanted to go back to work immediately, but the doc said I should stay home for a week and heal. Little did I know I’d be home for almost 4 months. Prior to TM, I was an active 53-year-old. I took aerobic exercise classes a couple times a week. I swam and hiked.

After I completed the intravenous steroids I started physical therapy. I could barely walk even half a block and still had weird sensations in my legs. I did therapy 2 or 3 times a week for about 6 weeks until my insurance ran out.

LESSON ONE: EXERCISE

I started walking again. At first I couldn’t go more than half a block very slowly, but I kept at it. Slow, short walks got longer. Don’t give up. I used the pool as much as possible. Water therapy is easiest for many people and often people who can’t walk can swim. I also find the cold water helped my pain as did using ice packs. (Hot water was the opposite. I found spas, saunas or even hot baths worsened my pain. Some medical professionals have verified that heat is bad for nerve pain.) I progressed slowly but within a year or so of diagnosis I could do anything I could do before. I attribute some of my recovery to exercising. Today at age 67 I still exercise almost daily.

Physical therapy may be an option that your insurance will pay for, at least in the short term. I also recommend a personal trainer. If you feel comfortable in the gym and know what exercises to do or class to take that’s great. Many people are fearful about exercising after being ill. This is a good time to hire a trainer after checking with your doc that exercise is okay. You may feel that trainers are expensive, but like all professionals they have skills that are worth paying for. Some people use trainers for long periods of time because, after they learn what they need to know, they also need motivation. Others train for a period of months, learn what they need to do and do it. Exercise has lots of benefits for everyone: losing weight, lowering blood pressure or cholesterol, increasing life expectancy, decreasing your chance of certain diseases, increasing balance and even brain power. For people with TM, exercise can do all those things plus decrease your pain and perhaps help your recovery. I hate to sound like a TV commercial, but those things are priceless. One of the best ways to pick a trainer is word of mouth. Otherwise check out a couple places before you decide.

One of the strange benefits I got from TM was standing instead of sitting. My pain was located between my chest and hips, more specifically from where my bra would end to shortly above my belly button. Sitting was very uncomfortable. I chose to either stand or lay down. Once I was well enough to go back to work, I spent much time standing at work and even at home when I ate, read, or watched TV. Current medical literature endorses standing for fitness, weight control and better health. Standing desks are good for you. One for TM.

PAIN MEDICATION

I can’t remember what meds I was started on with the exception of Neurontin. For a couple years, my doc and I tried different medications in different combinations with different dosages. Some of those meds were tramadol, amitriptyline, amitiza and percocet. Nothing worked well enough to allow me to feel good enough to work. I spent many hours crying.

One of the hardest things I dealt with was my attitude toward pain meds. I didn’t want to take them. Prior to TM, I believed that except for an acute injury or surgery only wimps took pain meds. I considered myself a tough person who should be able to get along without pills. I was fearful of addiction. Instead of following the directions on the pill bottle I held out as long as possible before I took a pill. By the time I took it I was in agony. What I was doing was completely wrong. Pills should be taken regularly so your pain can be under control. If you wait the pain gets worse and it takes more time for the pain meds to help. You spend more time hurting.

This is the first blog in a series by Barbara Sattler, a member of SRNA Board of Directors. Barbara is a retired judge and a published author. The blogs will also be published as part of a book on rare neuroimmune disorders by Sandy Siegel, President of SRNA.

James T. Lubin Fellow, Dr. Allen DeSena in Cincinnati, OH

Did you know that the very first James T. Lubin Fellowship recipient, Dr. Allen DeSena, has established a neurology practice at Cincinnati Children’s and is accepting new patients, both children and adults?

Dr. DeSena trained under Dr. Benjamin Greenberg at the University of Texas Southwestern in Dallas from 2012-2014, at the TM and NMO center, and has expanded the reach of expertise in the rare neuroimmune disorders to the Great Lakes and Midwest regions of the U.S.  He is furthering the goal of the JTL Fellowship in training others, and reaching and caring for those with a rare neuroimmune disorder. For those in OH, MI, IN, PA, and KY, he’s the specialist in your backyard!

If you or your child has been living with one of the rare neuroimmune disorders, and need to be followed by a neurologist, or perhaps you are seeking another opinion from a neurologist experienced in these disorders, or you need to re-establish with a neurologist years after your diagnosis, please call Dr. DeSena.

It is important to maintain a relationship with a neurologist after an initial diagnosis or acute treatments have been administered, and even after significant recovery has been made.  Should new or worsening symptoms arise, or anything of question a year or more out from diagnosis, many practices may require that you be re-established as a new patient.  You may not need them often, but a neurologist, and particularly one trained in the rare neuroimmune disorders, should be a significant member of your healthcare team. You want them to be familiar with you and your medical history.

CONTACT INFORMATION:

For pediatric appointments, call Cincinnati Children’s Hospital Medical Center at (513) 636-4222.

For adult appointments, please call the Adult Neurology Clinic of UC Health Physicians at (513) 475-8730.

Building Confidence for Transition of Care

Young people desire autonomy, but may not have the foresight or the aptitude to know how to reach their goals. The best way to start is to ask questions. I have learned there is rarely a consensus among the patient, parent/caregiver, and healthcare provider when discussing a teenager’s ability to do a task independently, such as remembering to take medications. Awareness of ability, or lack thereof, is crucial in order to create a plan towards independence.

There are three main components to transition of care: knowledge of health needs, being prepared, and taking charge. Listed below are skills needed to independently care for one’s own medical condition.

  • Explaining one’s own diagnosis
  • Understanding medications including indication, dose, potential side effects and surveillance
  • Communicating with the healthcare team
  • Refilling medications
  • Making appointments
  • Knowing when to call providers or seek emergent care
  • Understanding patient rights
  • Understanding/managing insurance

When we think of all the knowledge and skills necessary for self-advocacy and healthy behaviors, our first thought probably is to hide under the covers for a few days. Do not panic! Most caregivers acquired the skills and knowledge to navigate the healthcare system over time, and many times through trial and error. In the safety of the home, it is important to teach our teenagers and young adults how to be experts in their disease, communicate with others independently, and build foundational skills to care for themselves. Building confidence by mastering skills at a young age is expected to increase independence and decrease anxiety. By making smaller attainable goals and accomplishing them, the teenager will feel a sense of accomplishment over time, which will enable the teenager to feel empowered. It is important to remember that there will always be competing priorities; so working on these goals over time will help realize these skills.

Action Steps:

  • Talk about these topics with your teenager
  • Encourage your teenager to pick 1-2 items that are the biggest priority to them
  • Ask your teenager to make a plan to reach their goal
  • Choose a time frame to reassess the goal and modify the plan as necessary

This is the second blog in the series on Transition of Care. Audrey Ayres, RN, BSN, MSCN is a clinical nurse at University of Texas Southwestern Department of Neuro-immunology. She was recently award the 2014 Excellence in Nursing Award by the Dallas magazine. Audrey provides care for adult and pediatric patients with Multiple Sclerosis, NMO, TM, AFM, ADEM and Limbic Encephalitis.  She is also the primary nurse for the Pediatric Demyelinating Disease Clinic for Children’s Medical Center in Dallas, TX.

Central Texas Support Group

Hi everyone! My name is Gina Rodriguez, and I have volunteered to lead the Central Texas Support Group. I lived in the Dallas/Fort Worth area for about 10 years, and helped Barbara Nichols with the support group there. My husband joined the Army and has been stationed at Fort Hood, near Austin, Texas. Once we found this out, I spoke with Barbara, and we decided to start a group for Central Texas. Although it’s taken far too long to get off the ground, I’m excited to finally get this going!

My story is a familiar story, so I’ll keep it short. In 2008, at the age of 28, I woke up one day unable to urinate. Two days later, I finally went to the ER and had a Foley catheter put in. I saw quite a few urologists, none of whom could figure out what was going on with me. I had the catheter in for a month before I learned to self-catheterize, during which time my legs also grew weaker. It was finally determined that the cause was neurological.

The first neurologist waved me off and told me I would be fine. I saw a few more specialists and was finally put on steroids. The steroids seemed to help. The second neurologist that I saw ran more tests, and couldn’t figure out what was going on with me. He finally did a spinal tap, at which time I was diagnosed with transverse myelitis. My options were to wait and see what happened next, or he would refer me to the Clinical Center for Multiple Sclerosis at UT Southwestern. I opted to be referred to UT Southwestern (UTSW).

The neurologist at UTSW was my 10th specialist. It took two years and multiple tests and specialists to get to the right place. My diagnosis was between Multiple Sclerosis (MS) and Neuromyelitis Optica (NMO). For years, my neurologists at UTSW leaned toward NMO, although I did not yet meet the diagnostic criteria. I was officially diagnosed with NMO about two and a half years ago, although I have been treated with the NMO medications since 2010.

I have had approximately 8 flares since 2008. I have recovered from being blind, paralyzed from the waist down, and many other manifestations of this disorder. I am fortunate to have found the right doctors, and to have recovered well from flares. In 2014, my husband and I welcomed our son, Daniel, into the family. I hope to connect people with rare neuroimmune diseases, and provide a safe place to learn and support one another.

If you live in this area and would like to join our group, please contact me at tmafamily9@gmail.com

I Volunteered to Lead SRNA Nebraska Support Group

Hello, everyone. I am the new leader of the Nebraska Transverse Myelitis Association’s Support Group. I want to thank Nikki Goeschel for all of her hard work in getting this group off the ground and providing so much support during this transition. I look forward to meeting many of you soon to discuss the future and mission of our group. I have been asked to write a story about my life with transverse myelitis. Sorry it’s not a shorter story but it has been a challenging couple of years.

My father was always healthy. He boasted that his only hospitalization occurred because his tonsils were removed when he was eight years old. He walked 3 miles every day and was seldom ill with anything even as simple as a cold or flu. At age 76, he was diagnosed with Idiopathic Pulmonary Fibrosis (“IPF”), a fatal disease in which deep lung tissue becomes scarred over time and ultimately robs a patient of the ability to breathe. My father died within 60 days of his diagnosis. I had never heard of IPF, even though it kills as many people every year as breast cancer. Like my father, I had been healthy all my life, with only one hospitalization for an appendectomy at age four. I told my family, tongue in cheek, that I would probably end up just like my dad. I imagined I would remain healthy all my life and then finally get some weird disease that no one had ever heard of. Enter NMO.

On December 24, 2012, in my early fifties, I had a whooping cough booster shot based on a doctor’s recommendation because my husband had been exposed at work. About three weeks later, I started exhibiting symptoms that I blamed on the flu — low-grade fever, mild headaches, and extreme fatigue. I was able to manage the headaches and fever with Tylenol, but the fatigue was relentless. Most nights and weekends, I couldn’t even get off the couch. Three weeks after the initial symptoms started, I developed skin pain that felt like I had a sunburn over my enter body –even though I didn’t have a sunburn. That’s how I described it to my family doctor when I visited her on February 1, 2013. She did some blood work and attributed it to a virus. She told me it would pass in 7-10 days.

However, my symptoms quickly worsened: I began running a high fever and losing my balance. I also began falling. I would climb half way up a flight of stairs and suddenly realize I was no longer able to remain upright and falling was inevitable. Fortunately, I fell forward and not backwards down the stairs, which could have been disastrous for me. My husband also said he noticed that I was not going to the bathroom very often. So I contacted my family doctor again, and she referred me to an infectious disease specialist.

On February 12, 2013, I showed up at the specialist’s office partially paralyzed and incontinent. She examined me for a few minutes and then said, “These two symptoms bother me. Do you mind if I call a neurologist?” The neurologist told her to admit me to the hospital immediately and was waiting for me in my room when I arrived. By the time I arrived at the hospital, I was paralyzed from the chest down. After an exam, the neurologist ordered a series of MRI scans. I had been given a lot of Ativan, but I recall that my neurologist phoned the same evening advising me that I had something called transverse myelitis (“TM”), which sounded to me like something from outer space. He said he planned to start treatment with high doses of corticosteroids the next day. Looking back, I am grateful that I had a neurologist who knew he was looking at TM.

I spent the next three days in the hospital receiving infusions of Solu-Medrol and undergoing a series of tests and more MRI scans. I learned that I had extensive inflammation throughout my spinal cord. I had what is known as Longitudinally Extensive Transverse Myelitis (“LETM”), which is a spinal cord lesion that extends over three or more vertebrae in length. My MRI revealed that I had a lesion that was effectively seven vertebrae in length. I also had some diffuse inflammation in other areas of my spine. The MRI scan of my optic nerves was normal, and my brain MRI revealed lesions that are not typically seen in a person with multiple sclerosis. My neurologist ordered a lumbar puncture to test for Multiple Sclerosis and an NMO-IgG antibody whose presence could mean I have a rare disease called Neuromyelitis Optica (“NMO”). That is the first time I had heard of NMO. I researched TM and NMO at https://wearesrna.org and refused to believe I had any of the diseases listed on SRNA website. Certainly, I couldn’t have that weird disease described as NMO. I’m simply not that unique. Three days later, I left the hospital with the assistance of a cane and finished my last two days of Solu-Medrol infusion as an outpatient.

Since the beginning of my illness, I have displayed mixed clinical symptoms including seronegativity for three NMO-IgG antibody tests (despite LETM and other symptoms of NMO), which has made an official diagnosis of NMO difficult for physicians in Omaha and at Johns Hopkins University. Neurologists at the Mayo Clinic finally confirmed a diagnosis of NMO in September 2014. Since my initial presentation of TM, I’ve had five more relapses of the disease. I have had Longitudinally Extensive Optic Neuritis (“LEON”) in my right eye, a less severe attack of Optic Neuritis in my left eye, and three separate incidences of disease activity in my brain. At the same time, I have been struggling with the damage left to my central nervous system (“CNS”) by TM, such as chronic neuropathic pain.

I have suffered great indignities, along with professional and personal losses at the hands of this disease. As an attorney, I used to travel across the country handling arbitrations and mediations for a broker dealer. I loved my work. Now I am disabled and can no longer work as an attorney, in part, because I have chronic fatigue and I am constantly looking over my shoulder for the next relapse. Additionally, I still struggle with the damage done to my body by the initial attack of TM. I spend most of my time visiting physicians or otherwise tending to my care. I have had to fight with my employer, my health insurance company, my disability company and my own health care providers to get adequate treatment for this disease.

Two and 1/2 years after TM, I have assembled what I think is an excellent group of providers and caregivers with me as the captain of my care. I am stable for the first time in over a year thanks to the efforts of my local neurologist and my NMO specialist at Mayo. One of the greatest assets in my continued recovery and search for my new “normal” has been my personal trainer who has been instrumental in helping me with muscle strength, endurance, energy, self-confidence, and most importantly, balance and coordination. My hope is to continue to remain stable and improve my health. I would also like to help people with NMO, TM and other rare neuroimmune associated diseases, to navigate through the many challenges of this weird disease. That is why I have volunteered to help lead the Nebraska support group for the Transverse Myelitis Association.

~ Kelly Davis

Join our Podcast on NMO Studies and Clinical Trials: What Should I Know?

What are the various studies and clinical trials in NMO? How do these different drugs work? What is their mechanism of action? How do I know which one is right for me? How does a clinical trial benefit me? What is a placebo-controlled trial? What if I have an exacerbation during the study? What happens when the study is over?

These and more questions will be addressed during our Podcast tomorrow With Dr. Benjamin Greenberg from The University of Texas Southwestern Medical Center and Dr. Michael Levy from The Johns Hopkins University School of Medicine

In addition to our experts, four special guests from the pharmaceutical industry will be joining us to talk about novel therapies for individuals diagnosed with NMO and NMO Spectrum Disorder that are currently open for enrollment.

ABOUT OUR SPEAKERS

Benjamin M. Greenberg, MD, MHS

Associate Professor at UT Southwestern Medical Center, Director of the Transverse Myelitis and Neuromyelitis Optica Program, Dallas, TX

Dr. Greenberg is recognized internationally as an expert in rare autoimmune disorders of the central nervous system. He splits his clinical time between seeing both adult and pediatric patients. He routinely consults on the inpatient units of Zale-Lipshy University Hospital, Parkland Memorial Hospital, and Children’s Health. His research interests are in both the diagnosis and treatment of transverse myelitis, neuromyelitis optica, encephalitis, multiples sclerosis, and infections of the nervous system. He is actively involved in developing better ways to diagnose and prognosticate for patients with these disorders. He has led an effort to improve biorepository development and has created uniform protocols for sample handling and analysis. As part of this initiative his research has identified novel biomarkers that may be able to distinguish between patients with various neurologic disorders. He also coordinates trials that study new treatments to prevent neurologic damage and restore function to those who have already been affected. He currently serves as the Director of the Neurosciences Clinical Research Center at UT Southwestern and is a Cain-Denius Foundation Scholar. Dr. Greenberg is a member of The Board of Directors of The Siegel Rare Neuroimmune Association and also Chairs SRNA Medical and Scientific Council.

Michael Levy, MD, PhD

Assistant Professor of Neurology at the Johns Hopkins Hospital and Medical Director of General Neurology at the Johns Hopkins Hospital in Baltimore, MD

Dr. Levy is Assistant Professor of Neurology at The Johns Hopkins University and Medical Director of General Neurology at The Johns Hopkins Hospital in Baltimore, MD. Dr. Levy also directs the Neuromyelitis Optica Clinic and follows over 200 patients with NMO and related disorders. In addition to clinical work at The Johns Hopkins Hospital, Dr. Levy runs the Neuromyelitis Optica and stem cell research labs. The focus of his research is animal modeling of neuro-inflammatory disease and development of strategies to regenerate the nervous system with stem cell technology. Dr. Levy completed the MD/PhD program at Baylor College of Medicine in 2004, Neurology residency training at Johns Hopkins Hospital in 2008 followed by neuroimmunology fellowship training at Johns Hopkins focusing on NMO research. In Oct 2009, he was appointed to the faculty. Dr. Levy is a member of SRNA Medical and Scientific Council.

ABOUT OUR SPECIAL GUESTS

Dr. Athos Gianella-Borradori 

Chief Medical Officer | Chugai Pharmaceutical Co., LTD.

Dr. Gianella-Borradori is the Chief Medical Officer and head of Translational Research at Chugai Pharma USA, LLC and Chugai Pharmaceuticals, LLC in Tokyo, Japan.  He has over 20 years of domestic and global clinical research and development experience in the pharmaceutical industry.  Dr. Gianella-Borradori earned his doctorate in medicine from the University of Bern (Switzerland) and is a board certified hematologist and oncologist. During his career, Dr. Gianella-Borradori worked in teams developing medicines in several therapeutic areas including neurology, he pioneered the use of biomarkers in early clinical development, and kept a strong focus on the needs of patients.

Ms. Angela Melia

Senior Clinical Operations Leader, Project Manager | Chugai Pharmaceutical Co., LTD.

Ms. Melia has over 20 years of experience in domestic and global clinical research and operations with Hoffmann-La Roche in Nutley, NJ and most recently, with Chugai Pharma USA, LLC in Berkeley Heights, NJ.  Ms. Melia’s clinical programs were Phases I-IV from initiation through close-out in various therapeutic areas in virology, infectious disease, metabolism, oncology, neurology, and inflammation. She led and managed project teams, regional monitors, and in house CRAs. Ms. Melia completed her Bachelor of Science in Biology at Seton Hall University, South Orange, NJ that earned her Magna cum Laude, and completed a mini-MBA Certificate Program in BioPharm Innovation at Rutgers University in New Brunswick, NJ.  Ms. Melia is a PMP Certified by Project Management Institute, Inc. (PMI).

Eliezer Katz, MD FACS

Senior Director | MedImmune LLC

Dr. Katz is currently senior director at RIA (respiratory, inflammation, and autoimmunity) clinical development, MedImmune LLC. At RIA Dr. Katz oversees clinical development in neuro-inflammation, inflammatory bowel disease, and myositis. Dr. Katz earned his MD degree from the Hebrew University-Hadassah Medical School in Jerusalem Israel. Dr. Katz joined the pharmaceutical industry in 2004 following a 20 years of academic career as a liver transplant surgeon. His last position in academia was associate professor of surgery and director of liver transplant at University of Massachusetts Medical Center. In Industry, Dr. Katz was vice president at CTI clinical trial and consulting services, and senior director at Medicine Development Group, Pfizer Inc. Dr. Katz is an author in more than 50 peer review publications.

Robert Glanzman, MD

Executive Director, Neuroscience Lead, Global Medical Science | Alexion Pharmaceuticals, Inc.

Dr. Robert Glanzman hails from the Midwest of the USA. After graduating medical school at Wake Forrest University, he completed a residency in neurology at the University of Michigan and fellowship in diagnostic nuclear medicine at Duke University. He spent 7 years as Adjunct Clinical Professor at Michigan State University, practicing general neurology and nuclear cardiology/neurology in the Upper Peninsula of Michigan, an area of highly endemic multiple sclerosis. During this time he taught residents and was Primary Investigator for numerous clinical trials in neurology. He came to Pharma in 1999, holding titles of increasing responsibility at both large Pharma companies (Pfizer, Novartis,Hoffmann La Roche) and small biotech companies (Nektar Therapeutics). From 2009 to 2012 he was the Global Development Team Leader for Ocrelizumab in MS at Roche.

You Can and Should Dream Big!

My favorite question to ask our teenagers in the TM and NMO clinic is “What do you want to be when you grow up?” This provokes a wide array of answers, from teacher to CSI agent to rocket scientist. Helping our teenagers identify how to reach their goals despite their disability is one of my passions.

Data are Shadows of Stories

Today, I (Roni Zeiger) had the privilege of speaking at RWJF’s #Data4Health conference in San Francisco. Here I’ll share a written version of my brief talk and my two slides.

I love data. In some contexts, that might sound like a confession. Obviously not here. I grew up loving math, then science. I decided the most interesting secrets were probably hidden in biology, in particular molecular biology.

I worked in labs in college, learned how to splice DNA, to make antibodies that were part mouse and part human. It was awesome. It was also a little lonely. The lab was a place where I was looking down more than looking up.

I then discovered medicine, and found a place where I could do science and stories at the same time. Data and humanity… but oh man, the data!

My Palm Pilot was always with me, and I learned how to write computer programs. You see, the medical center was producing so much data, we just needed better tools to analyze it. I also ended up getting a degree in medical informatics and cemented my identity.

I still saw patients, something about that kept me grounded, especially when I went to work at Google.

brid-connect-a-dot

 

Google… holy cow, best data ever. I analyzed all the health questions people across the globe were putting into the Google search box. Symptoms, diagnoses. Drugs, supplements. Results of a scan. Good news. Bad news.

And I started seeing that those searches represent people. Data are tiny shadows, projections of rich complex stories.

Sometimes you can connect the dots, see how a series of searches reveals a new life, or tragedy, hope or fear. And there is SO much more in between those data points.

Even a child, perhaps especially a child, can show us that. (In this case, one of my children.)

bird-colored

To be clear: we need more data, and we need better access to data. And we need the stories that bring them to life, that give them color and context.

The data may hold the answers, but stories tell us which questions to ask and stories tell us why the answers matter.

~  Roni Zeiger

This blog was originally published in the Smart Patient Blog. Click here to view the original article.

 

Join or update your membership and share your data

Learn more about our Clinical Studies & Trials

Join the conversation at Smart Patients

What Drug Companies and the FDA Need from Us

If you are interested in learning more about clinical trials, how new drugs come to market and what this means for NMO, TM, ADEM, Dr. Benjamin Greenberg’s presentation at the 2013 Rare Neuro-immunologic Disorders Symposium shares what we need to know and what the future looks like!

[youtube]https://youtu.be/lemEpjSGcj0[/youtube]

To view other videos from the 2013 Rare Neuro-immunologic Disorders Symposium hosted by SRNA, please click here.