recap: 2010 nmo patient day

On November 10, John and I found ourselves in the Hilton in Beverly Hills, California, at the second annual NMO Patient Day sponsored by the Guthy-Jackson Foundation. Similar to the symposium I went to in Dallas back in September, the NMO Patient Day was a gathering of patients, their caregivers, clinicians, and physicians; I reconnected with some of the people I had previously met just a few months before in Texas. The Patient Day, while similar to the symposium in that a part of its purpose was to dispense information addressing issues NMO patients are concerned with (e.g. latest effective treatments, future of research, available resources), the main difference was that the NMO Patient Day was just that: a day with only NMO patients whereas Dallas included TM and ADEM. Another difference, related to the fact that the symposium was threedays versus the Patient Day being only one, was that the Patient Day felt much less dense; there were scientific talks but my brain didn’t hurt by day’s end. That’s because the event really was geared toward patients and not a medically-minded audience of doctors and research scientists. After opening remarks by Victoria Jackson who founded the foundation with her husband, Bill Guthy, after their daughter was diagnosed with NMO, the program went straight into explaining what the foundation has been doing in the past year or so. A clinical consortium had been set up between three NMO centers to work toward advancing medical research and thus, patient care: the Scottsdale Mayo Clinic with Dr. Dean Wingerchuck, the UT Southwestern‘s NMO Center in Dallas headed by Dr. Benjamin Greenberg, and the Johns Hopkins Neuroimmunology department in Baltimore with Dr. Michael Levy. The purpose of the consortium is to collaborate in research in order to advance the sciences and studies of NMO. Because of these efforts, largely due to the support from the Foundation, we are now closer to figuring out a cause for NMO than for MS despite the massive funding and years MS has over NMO. (This, at least, was what we were told; as far as how this is so, I have yet to understand the reasoning.)

The IgG biomarker, in fact, which was discovered by the Mayo Clinic a few years ago to test for NMO, was the first antibody ever found in an anti-inflammatory disease. The IgG existence indicates that NMO is indeed its own disease and not a form of MS. (Now if only my friends can remember this and quit thinking I have MS.) But this medical advancement helps NMO shed its orphan status, be recognized as a unique disease, and thus attract more research.

There was also a huge push to join the NMO repository of the Accelerated Cure Project (more about this in a future post), which I’ve already done in my previous Dallas trip. This time in L.A., John even joined as a control subject. This was followed by a Q&A session between the NMO audience and a panel of physicians. Some interesting things I heard:

  • There was a study in France showing that women with NMO actually experienced a decrease in relapse risk during pregnancy. (I have a friend with lupus who said the same happened for her; perhaps this points to a link between hormones, immunology, and disease remission.) Postpartum, however, the risk for relapses is higher than usual. This means there is a very small window in which one can get pregnant and have her baby safely before having to get back on her meds right away. This also means breastfeeding is unlikely.
  • Both Dr. Wingerchuck and Dr. Greenberg follow Dr. Bruce Cree of UCSF‘s protocol of reinfusing a patient with Rituximab every six months regardless of whether or not the B-cell count has risen. My current neurologist does NOT do this, and this is something that’s been on my mind lately because I’m thinking of switching to Dr. Greenberg in Dallas but at the same time do not want to have more frequent rounds of Rituxan.
  • Receiving prompt treatment (e.g. Solumedrol) for acute NMO attacks is extremely important as the immediacy of the treatment is directly correlated to the legnth of the recovery process. In the UK, there is a medical card patients carry with them, and whenever they enter a doctor’s office or the ER, the card can be scanned to pull up the patients’ entire medical records, including a protocol put into place by his/her neurologist on how to treat acute attacks. The U.S., of course, does not have socialistic medicine, so this method would not work. But the importance of having such a treatment regimen in place is recognized. I can attest to the frustrations of going to the ER for an acute attack and having the medical attendant stratch his head, asking me, “How do you spell your condition again?” It’s tiring when you have to conduct your own treatment in the face of pain, paralysis, incontinence, blindness. If NMO has taught me anything, it’s that doctors are just as humanly fallible as the rest of us.

The Q&A was followed by a stem cell therapy presentation by Dr. Richard Burt of Northwestern which I’d already seen in Dallas. Then Dr. Daniel Siegel a psychiatrist from UCLA, switched gears up a bit and talked about mindful awareness/meditation and the importance of it for everyone, especially those with NMO as our disease alone is such a huge source of stress. He took the entire audience into a mindfully aware state, instructing us to concentrate on our breath and our selves. He said that during meditation or mindful awareness, our brain is completely active–this is not relaxation, where the brain is inactive. I have been told for years by numerous people that meditation would be good for me. My friend Karen bought me Wherever You Go, There You Are five years ago. I never finished the book. My aunt tried to teach me tai chi; I grew impatient and gave up. I downloaded meditation podcasts but never listen to them. A therapist I’d seen showed me meditation techniques, but I’d given up on that too. It’s like my brain knows it’s good for me, but something hasn’t clicked into place for me to actually actively pursue it. I did tell John while at the Patient Day, though, that I was thinking of doing at least two minutes of meditation and breathing exercises every day for 30 days to see if it would be beneficial and, of course, blogging about my experience here. Now if only I can get to the point of actually starting the trial experiment.

The 2010 NMO Patient Day was a great event. Not only did the Foundation offer financial support in the form of travel grants, it offered moral support, saying that now, NMO patients have a home. We are no longer an orphan disease, patients lost and confused, knowing nowhere to turn. Now there is a growing community and plethora of information and resources people with NMO and their caregivers can turn to when they need it. With NMO patients being the go-getter types, it was only a matter of time when we’d all band together and form an alliance and support network. It just took the vision and means of Bill Guthy and Victoria Jackson to make it all happen. So thank you to Bill, Victoria, Dan, and the entire staff behind GJCF, for such a successful 2010 NMO Patient Day.

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