Tuesday, January 29, 2013

New video: Living with Multiple Sclerosis, Hoping for a Stem Cell Therapy | Nan Luke


Para los subtítulos en español, haga clic en el botón "CC" en la ventana de vídeo.
For English closed-captioning, click on the “cc” button in the video window.

Invisible pins and needles: we’ve all felt them from time to time when a hand or a leg falls asleep and we try to shake away the numbness. The prickly pain usually lasts a few seconds, at most a minute or two. But can you imagine enduring it for decades?

Just as Nan Luke was hitting her stride as a litigating attorney in her twenties, her left side went numb without warning from the bottom of her foot up to her chin. The diagnosis was multiple sclerosis (MS) and thirty years later the invisible pins and needles haven’t gone away. At the December Spotlight on Disease seminar, Nan spoke to the CIRM governing board about the challenges of living with MS and also about her excitement for the promise of stem cell treatments.

Multiple sclerosis is a disease in which the immune system attacks the central nervous system, causing short-circuiting of nerve signals in the brain, spinal cord, and optical nerves. The location and severity of symptoms varies for each person with MS and often the symptoms rear themselves in the form of flare-ups, or exacerbations. Nan spoke first-hand of her disease’s course:
I would suddenly with no warning go blind in one eye. And in order to treat that, I'd have to take high-dose steroids, and I still kept driving and working, ….and it would recede after a couple of months. Then I got, out of the blue, several years later, what they call the "MS Hug," and that is your entire midsection--I woke up one morning, and all feeling, all muscle control was gone for a section of about eight inches, and it's still gone, and the joy of that is you lose bowel and bladder control. Some of it has come back…The other thing that I found, after a few years of having MS, was I had excruciating fatigue. If I get hot, if I'm tired... The fatigue is something you've--it's like from the core of your body, and that doesn't change.
Although drugs can reduce symptoms, no cure exists. As Nan pointed out:
I've gotten progressive MRIs, I'm taking the medication, I've revamped my life. It has slowed down the progression. But the MRIs show that I have lesions and damage [in the brain], and they've gotten bigger, and there are more of them.
Nan looked healthy and full of energy as I watched her presentation. You’d never have guessed she had a debilitating chronic disease. Her symptoms were invisible to the audience and me. To help bring more visibility to the disease and to the need for effective treatments, Nan has been an active MS patient advocate and is on the board of trustees for the Pacific South Coast chapter of the National MS Society. Six years ago Nan’s advocacy led to patient advisory work with UC Irvine stem cell scientists, including Dr. Thomas Lane who also spoke at the seminar (Lane has received a SEED and an Early Translation award from CIRM). Dr. Lane described promising results that demonstrate sustained muscle control improvement in a mouse model of multiple sclerosis after spinal injection of stem cell-derived neural cells (note: we’ll post Lane’s video later this year after his data is published).

This work gives Nan profound hope and excitement for the MS community:
and let me tell you... the possibility of stem cell therapy is huge. What we have now-- shots or pills daily--is nothing like the promise of stem cells, and what Dr. Lane is looking at is for people like me that have proven damage, and I've had it forever, is that there's a possibility now with the stem cell therapy that there can be some repair. What helps with MS is also in many ways applicable to spinal cord trauma, arthritis, diabetes, Parkinson's disease. There is so much … this basic science translates into hope for us and treatment for MS and other diseases, and I myself am grateful. Thank you for letting patient advocates get involved because we want to encourage you. Researchers rock!

T.D.

1 comment:

  1. you describe the symptoms I experienced so closely similar Nan. I have had 2 flare-ups since I started Copaxone almost two years ago now. Both flare-ups were in my spine and I haven't had a brain flar-up since June 2010 which went until Jan 1st 2011. I look forward to future research & developement of better treatment for MS. Scott Ricker

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