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 neuro-immune 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

Think people should hear about this?

I Volunteered to Lead The TMA 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 http://myelitis.org and refused to believe I had any of the diseases listed on The TMA 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 neuro-immune 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?

Teaser_May_2015What 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.

Please share your questions and concerns with the experts here.

Make sure to register for the podcast to learn more!

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 Transverse Myelitis Association and also Chairs The TMA 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 The TMA 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.

Occasionally a young patient does not have an answer, and after digging deeper I learn that their hope of being independent from their caregivers has been lost. There is a feeling of anxiety that they will not be able to move away from their parents to go to college or start working. Sometimes the perspective of the teenager affected by TM, AFM, NMO, ADEM, or ON, or even the perspective of the family, is the greatest limiting factor preventing them from reaching their full potential. Their expectations of what life would be have not been met, and they are disillusioned about their future. This mental hurdle is by far the most challenging. When young people buy into the lie that they cannot go to school or work because they have issues with their sight or ambulation, then they cheat themselves and those around them out of reaching their full potential.

After diagnosis, the trajectory of the teenager’s life is altered. How much it is altered depends on factors like the severity of the illness, its impact on daily activities, the degree of recovery, and psychosocial support. The child’s dependence on their caregivers and others increases and their independence decreases. Hopefully this is for a short period of time, and as treatment interventions and rehabilitation are put into place the child resumes their previous trajectory. When that doesn’t happen we assess for various barriers affecting independence and look for solutions. It is possible to overcome the mental barriers, but it requires getting help from others and a willingness to take a chance. There will be many trials, but it is important to remember that many times success is defined by our ability to overcome challenges and push through; it is the journey, not the destination that makes us.

We want to inspire our young patients to DREAM BIG! I tell them there are politicians who are in wheel chairs running entire states and there are chefs that are blind. I explain that their medical condition is not the driving force in their life, just a challenge. We hope to help them chase after their dreams and break down the obstacles into manageable steps to ultimately be the best they can be.

This is the first 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.

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

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

AXS Map

For those who use three or four wheels for personal mobility, you might be interested.  I have recently stumbled upon a website that lists places of business utilizing the Google GPS Format for mapping cities and towns in the US and other countries, and showing places of interest such as restaurants, hotels, parks, etc. as a general locater. The website allows its members to locate different areas of interest, click on a specific place shown and see if it has been rated according to accessibility or not.  Currently, since the site is so new, not many have been rated.

How it works; you can join for free and give your own personal rating of places you have visited according to certain accessible categories; such as entrance, bathrooms, crowded or spacious, noisy, accessible parking, etc.  The website is “Source Dependent”, meaning places are not automatically rated, but if someone has visited and rated a place, it will show that person’s ratings.  That someone is a member who took the time to put their evaluations into the program and rated places they have visited.  If it is already rated and you visit the place, you can also give it your rating.  Things may have changed, or even improved, since the previous rating had been posted.

I invite you to first just visit the website http://www.axsmap.com and look around, watch the videos to learn how it works before joining.  If you are interested, join and help populate the data for others to see.  It will be a great help for out-of-town visitors or even “locals” who would like to go a place but would like to know if it is wheelchair accessible or not.  This is a non-profit organization and the site was designed by a fellow wheel user.

I personally think it is a great idea and have already started putting in my ratings for the area in which I live, and other places outside my area that I have visited.  You can also do it from your Android smart phone or tablet while you are there.  There is a comment section where you could rate an entrance a four star out of five but it has a three, four or two inch step entrance, or several steps, but the facility has a ramp they will put down for a wheelchair to gain access.  A short tutorial video is also on the website showing how actual people rate places.

Remember, the website will only work if people like us populated it with data.  It works anywhere there is a built in Google mapping capability, I think.  I’m still trying it out.  Those in the UK might try it also.  If you like it, pass it onto your contacts and friends.  (p.s. Able Bodied people can also join in on it).  If you are a member of other organizations besides the TMA, pass this information on to those who are members there with you.

I’ve been in a wheelchair as a paraplegic with one arm using a power chair for mobility since 1994 and could really have made use of this information when traveling outside my area.  I’m looking forward to lots of data being put in so others can use it in the future.

Happy wheeling; I’m off to see what I can rate with my I-Phone.

~ Bob Cook from Spring, Texas

Videos of the 2013 Rare Neuro-Immunologic Disorders Symposium Available!

KEYNOTEVIDEOSSYMPOSIUM

We’ve got good news for all those who weren’t able to attend the 2013 Rare Neuroimmunologic Disorders Symposium! You can now view the first day of Presentations on our website! Please go to https://myelitis.org/portfolio-view/2013-rare-neuroimmunologic-disorders-symposium and browse through them!

My Story Prompted Me to Start a Support Group

I volunteered to be a support group leader for The Transverse Myelitis Association because of the need for awareness and support for our members and caregivers living with this condition.  I agreed to help as a support group leader because of my experiences and my story, which I am sharing with you.

On March 14, 2012, I visited my primary care physician with numbness in my feet and legs.  My primary care physician ordered an X-Ray and did not think it was anything serious to worry about.  However, on March 15,, I was completely numb from my waist down.  I could not feel anything below my waist.  I was scheduled for surgery on March 19 for other reasons.  I had been having many medical problems including internal bleeding, blood in my urine, hair loss, weight loss, and GYN problems.  All of the doctors treated my problems separately.

On March 15, my OB-GYN physician instructed me to go directly to the Emergency Room (ER) as he felt that it was something very serious and needed immediate attention.  Upon my arrival at the ER, the on-call neurosurgeon was called in to review my case and they thought that I might need to have emergency surgery.

I was very blessed that the neurosurgeon assigned to my case was very experienced with Transverse Myelitis.  He diagnosed me with Transverse Myelitis (TM) that night and admitted me to the hospital for further testing.  I did not have to have any type of surgery.

The doctors could not determine what else was causing my problems.  Therefore, one doctor said Lupus and one doctor said Sjogren’s syndrome.  Finally, it was determined that I had TM and Lupus.  I was treated with intravenous steroids, cellcept and hydroxychloroquine and a long list of other drugs.

I was also informed that my other previous medical problems were due to the TM and Lupus.  Therefore, my surgery that was scheduled for March 19 was cancelled.  On May 22, my neurologist informed me that my final diagnosis would be TM, NMO, Lupus and Sjogren’s.

I was so confused and did not understand all of this information.  My doctor tried to explain the conditions and took time to speak with me during my appointments, but it was not enough time to comprehend this new medical condition.  I tried to find local support groups, a medical center that provided support as well as other individuals who understood and had experienced such a rare disease and who could answer my questions.  There was no one locally.  I was able to connect with TMA and find many of the answers through the website and other electronic information.  But there was not a physical local support group.  I had to answer my own questions through my research.  I spent many hours each day researching my medical condition and trying to find more answers.

My medical situation changed my life style completely and my family provided all of the rehabilitation for me.  I had to learn how to walk again as the doctors told me that I may never walk again or may only gain some mobility with restrictions.  I can now walk again, but I have my limitations.

The medication is hard on my system and I had to adjust to the severe pain and also had to limit my activities because of the rest I needed to get through the day.  Many people look at me as if nothing is wrong with me because I look so healthy; but what people do not understand is that I fight every morning to get started and fight every night to get to sleep because of the burning, banding and pain.

Therefore, I want to be a support for others so that they will have a local resource to call, meet and ask questions and also get help with understanding it all.  This is a very complex medical condition and it is very important that we provide the support to help others get the support and awareness that they need.

It is also important to me that people do not have to experience the long time pain and medical problems before they are diagnosed.  It is important to know that we can fight this medical condition together; but alone it can be hard and bring on other life-changing issues.

If you are in the Richmond, VA area, please contact me and I look forward to us getting together and forming a support group for these rare neuro-immune diseases.

Together we all can form the vision and provide long-term support and awareness.

~ MaLinda Washington, Richmond, VA

 

Life on hold: the experience of living with Neuromyelitis Optica

A research paper was recently published from the Northern UK NMO Service by Drs. Kerry Mutch, Abigail Methley, Phil Moore and Anu Jacob to develop an improved understanding of the experiences of people living with NMO.  15 patients from the Northern UK NMO Service were interviewed and five major themes were identified – diagnosis and treatment, symptoms, adjustment, identity and support. The authors reported that NMO is a difficult condition to live with due to the unpredictability of relapses and accrued disability of visual or spinal symptoms occurring with each relapse. Poor vision, reduced mobility, bladder dysfunction and pain affected participants’ independence and experience of living with NMO. Participants reported that during relapse and recovery they would ‘‘put their life on hold’’. They identified the importance of periods of stability to enable them to adjust to their condition and therefore aim for ‘‘normality’’ of life that they believed was comparable to their peers.

The study also outlined several implications for rehabilitation.

To read and learn more, please click here