2013 NMO Patient Day

NMO Patient Day is unique where many firsts occur for NMO patients and family: the first time someone with NMO meets another person with NMO; the first time NMO patients can personally talk to top NMO clinicians; the first time people feel that they are not alone; and the first time they experience hope and a sense of belonging. Repeat attendees enjoy reuniting with friends and also welcoming those who felt so alone.

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Patient Testimonials

This past November I was blessed to be in the same room as many other patients that have been diagnosed with NMO. By attending what is in reality an educational and emotional summit for those that share a common disease I was able to meet many amazing people. While we came to the conference foremost to learn about our disease I myself wanted to meet many of the individuals who I have only ever spoken to online or over the phone. In rare conditions like ours many patients have never met someone else with the same diagnosis and for me meeting some of the people who I have been talking to online for the past few years were amazing. Putting a face and voice to the name that I saw on the computer, being able to give hugs, and share tears was amazing. It helps to hear the stories of others and see if they are like our own. It helped to be around those that understand what we are going through and how much of a struggle it is each and every day. I know I met so many “”new”” people this year at the conference I could barely contain my emotions. I wanted to just hold on to each of them and never let them go. Each one of my new friends are special to me and I loved being able to see them and support them in all of their efforts be it their ability to walk, receive an education, or simply survive. That is what we are. We are survivors. We fight this disease each and every day and each night we thank our lucky stars that we are here to fight another day. That is what the conference was about for me. To learn. To meet friends. To embrace each and every opportunity that the Guthy-Jackson Charitable Foundation provides us with. I can hardly put to words how much these conferences mean to me and the fact that I can be there and share it with so many others is beyond words. It’s amazing and life changing, something that I am not soon to forget.

– Heather Sowalla

This was my first year attending NMO Patient care Day. I was so glad to meet other people who have been affected by NMO and hearing and learning about their stories. I left the conference with more information about the illness I have. I changed my eating habits due to the information I learned during the breakout sessions. I found the nerve to ask a question during “”Ask the Doctor””. I left the conference feeling empowered! I now know I am not in this fight alone. I know that their is hope for my future. I left the conference with the strength and determination to do all that I can to to “”Be the Cure””. This was an awesome experience.

– Tina Lee

Let me start by saying that coming to Patient Day the second time around was much easier than the first. This time around, I knew the schedule of events to expect, I had a pretty good idea of what was emotionally in store for me, and best of all, I knew there would be friendly faces to sit by in the conference room (apparently there’s still a small sliver of insecure-middle-schooler-at-the-cafeteria in me). This second time around, the anxiety of wondering whether or not I would be okay with the things I would hear from experts and fellow patients was replaced with excitement to reconnect with old friends and hear the latest encouraging breakthroughs in research. This second time around, I was definitely ready and rearin’ to go.

This year, the NMOments (see what I did there??) began at the airport, the second I stepped onto the shuttle bus to the hotel. My dad (aka my unwavering supporter, coach, number one fan, best friend, resident pharmacist, and all around great guy) and I boarded first. A pair of women got on next, and as they sat down across from us my dad nudged me, motioned to his own bright green bracelet, and then pointed to its exact copy on the wrist of the woman sitting across from us. We asked if she too was headed to the conference, and she nodded in confirmation. She then narrowed her eyes in deduction, pointing her finger back and forth between the two of us and asked, in what would seem like code to any NMO-outsider, “”Which one of you?””. I identified myself as the lucky one, and she put her arms out for a hug as she proclaimed “”sisters””. It was in that moment that the NMO lovin’ that surrounds Patient Day began for me. Coincidentally enough, the following six or so people to board the shuttle next were also “”family””, and we turned that bus into quite the NMO party. We launched into what would seem to many as a foreign language; talk of Rituxan, cellcept, t-spine lesion lengths, aquaporin-4, optic neuritis-you know, the usual. And that right there, I think, is part of the beauty of Patient Day. Beginning on that shuttle bus, and continuing throughout the duration of Patient Day, I was free to be me. I was surrounded by people who have been through “”it”” too; we could talk the NMO talk, and simply, blissfully, just get it. Everything else superficial about our lives was so glaringly unnecessary that we didn’t even need to acknowledge it, and within minutes of meeting these fellow patients, I could be me.

But the thing is, the first time I came to Patient Day, I hadn’t yet come to all of these realizations. I hadn’t yet gotten to know all of the amazing individuals, and hadn’t yet gotten a glimpse at just how uplifting and encouraging the messages at Patient Day could be. Instead, being surrounded by a roomful of fellow patients that first Patient Day, I was instantly transported back to “”patient mode””. And this was not a place I liked to be. In this mode I wasn’t the strong, independent person I used to be pre-NMO. In this mode, I was completely powerless. My body had revolted and, in doing so, had stripped me of the privilege and ability to fix my problems on my own. And as a somewhat stubbornly independent person, I found this to be a tough pill to swallow (weak health-related pun, my bad). Worse yet, since I had no control over my physical state in “”patient mode””, I decided I would find something I could take control of: my emotional state. I took all of the confusion and anger and sadness at this disease, and I locked it away. I internalized it all, in order to appear strong and in control of this one sector of my life that I still had a say in. This was a rough and lonely time-“”bottling it up”” should never be one’s strategy of choice. Eventually I came to my senses on the matter, however, and realized that shutting people and feelings out was in fact counterproductive. It was still quite some time, though, before I felt I had finally released for good all that I had bottled up during that time. That’s why, for me, “”patient mode”” came to be synonymous with things like “”weakness””, “”powerlessness””, and “”loneliness.””

But that was all before Patient Day. Now “”patient mode”” isn’t so bad. Instead of associating it with “”weakness””, I now think “”strength””-you simply can’t spend a day surrounded by all of the incredibly strong and inspiring individuals at Patient Day and still think “”weakness””. And instead of “”powerless””, I now think “”empowered””-the day is filled with the top clinical and research minds declaring hopeful thought after encouraging statement after reassuring study result. And finally, there’s no way I still associate “”patient mode”” with “”loneliness””. To be surrounded, if even only for a day, by an entire roomful of people who get it, when we live the other 364 days of the year surrounded by people who think that NMO is likely just someone’s initials, is indescribable. To be surrounded by a roomful of people who have been through the wringer, and still exude strength and hope and optimism is beyond powerful. In short, to be surrounded by a roomful of family is something that we all would have never had the opportunity and gift to experience this year, had it not been for this one special day. And that right there is the beauty of Patient Day.

– Haley Serebin

This was my first time to attend an NMO Day. It was a wonderful experience and I learned a lot about the disease and how a “”cure”” is in the works. I am very familiar with coordinating large events like the NMO Patient Day and was very impressed with how well everything was organized. The very only suggestion I have is to have available information and help for NMO patients attempting to obtain disability benefits. My Step-Daughter, Misty Fitzgerald, has been attempting to get disability benefits for two years, because NMO has made it impossible for her to work. To date, she continues to be denied disability benefits, and was forced just last week to declare bankruptcy. It would be interesting to see how many other NMO patients are having the same issue and hopefully how most have cleared this hurdle.

Again, excellent job and I’m looking forward to next year’s patient day.

– Randy (and Karen) Childs

So much was received at my first NMO Patient Day – beyond the totebag of goodies and manuals, books and cookbooks, and that awesome Victoria Jackson makeup survival kit! –
further information on NMO, what is behind it, how to treat it, how to cope with it, how to reach out to others with it, how to inform those who don’t know about it;
empathy and understanding from at last being able to speak with other patients about how it affects them physically and emotionally, how they are treating it, living with it;
inspiration to rise above and not let NMO control me, but to learn how to control IT ; and above all, HOPE!

Hope in seeing how other patients have overcome the results of their attacks and have not allowed those results to limit their lives. Whether they exhibited little or tremendous effect from the disease, they do not let it affect who they are on the inside or their joy in living.

Hope in hearing from the doctors and other patients how well the current medicines are working to prevent further attacks – particularly Rituxan.

Hope in hearing the progress of clinical trials for future medications and the possible applications of stem cell therapy.

Hope and inspiration in hearing the courageous and adventurous keynote speaker, Christine Ha – and hearing the stories of the people around me — the couple from Guatemala who were in the States hoping to find a doctor more knowledgeable about NMO for her unconfirmed diagnosis; the young couple from Canada with a not-quite-one-year-old baby who demonstrated the love and support needed to overcome the daily struggles from this disease; the gentleman from New Orleans who traveled by himself in his wheelchair through three airports to attend the gathering; the people who had attended the last Patient Day in wheelchairs, yet walked through this one without assistance…and the list could go on and on.

Thank you, Victoria Jackson, Bill Guthy, and the GJF staff, for an uplifting experience and the gift of HOPE!

– A grateful Patient

I would like to say a HUGE thank you to everyone who helped set up patient day. A huge thank you to Mr. Guthy and Ms. Jackson for starting the ball rolling.

This was my 2nd patient day that I have attended. Each time, I have come away with more knowledge and understanding about this disease.

As I am sitting in a hospital bed right now looking at getting my first ever plasmapheresis treatment, I am not as scared because of what I have learned during patient days and meeting amazing survivors like myself. Thank you!!!!

– Judith Holbrook

One of the most amazing experiences of my life!!! I feel an overwhelming sense of gratitude toward the GJCF for making this event possible. I learned so much about myself and my disease. I had so many questions, and so many answers. It was so nice to meet others like me. This event has changed my life forever! Thank you. Thank you. Thank you!!!

Ivan Estrella

I am the mother of an NMO patient and this was our second time attending. Patient Day is a wonderful opportunity for patients and families to learn about the latest strides in finding a cure for NMO and enables us to participate in that effort by donating blood and becoming advocates for the Foundation. This illness affects everyone in different ways and Patient Day affords individuals the ability to discuss their own unique case with the best NMO specialists in the world. Through this experience, we have learned that we are not fighting this battle alone. It has given us the opportunity to bond with others like us forging new friendships and support groups. Our heartfelt appreciation to Victoria Jackson and Bill Guthy for their love and support not just for their beautiful daughter, Ali, but for all of us afflicted with this illness.

– Saadia Montaner