Rachel Tracy-Scheaffer:
At about 2:00 in the morning I woke up and it really literally felt like somebody was pulling my spinal cord out of my brain. It just was the most excruciating pain.
Brooke Thomas :
She said it felt like she was looking through the ocean. And as a parent you’re not really sure what that means.
Anita Dudley :
I couldn’t move after that at all. So Gene got me to the emergency room.
Fred Stecher:
They did a spinal tap a few months later and that came out negative.
Kendall Clark:
We did do the MRIs. He said it’s a cyst, a tumor or MS.
Julie Shultz :
And I went through a year of diagnoses and I went blind in my right eye.
Erin Miller:
It was a long process. It was just very frustrating.
Sarah Ellis:
About a week later I saw my neurologist, told him I’m questioning this MS diagnosis.
Julie Shultz :
I pressed my obstetrician to do the NMO-IgG test, which he ordered for me.
Erin Miller:
And they said, you have NMO. And I was like, well what is that?
Benjamin Greenberg:
Most of the physicians they talk to have never heard of the disease, let alone have an idea of how to treat it.
Christine Ha:
I would be in the ER saying, “You need to give me this. You need to give me that.”
Sheila Sheckels:
I’m not trying to be a doctor. I’m not trying to step on your toes.
Rachel Tracy-Scheaffer:
Please just listen to me. Please. I know what I’m talking about.
Sheila Sheckels:
She was walking and by the time that he would concede she was blind in her right eye and she was a quad.
Rachel Tracy-Scheaffer:
At that point I thought I was alone because it’s like, well, nobody knows about this. Where do I go?
Julie Shultz :
That’s one of the great things that the Guthy-Jackson group is doing is trying to get better information out there.
Benjamin Greenberg:
Linking patients up with each other and linking them up with a small army of physicians and scientists who are trying to figure these things out.
Jesus Loreto:
The energy, the hope, the security that we felt …
Rachel Tracy-Scheaffer:
A sense of belonging.
Erin Miller:
So that you know you’re not alone in this disease.
Sarah Ellis:
They said, you know, have your doctor call us. If you can’t come to us, they can call us. We will help you.
Dean Wingerchuk:
They’re relieved at the end to get a diagnosis and a treatment plan. At the same time, they realize that not very much is known about the disease.
Sean Pittock:
It’s patients who have told us what the disease is. They have defined the disease.
Dean Wingerchuk:
As part of the NMO Clinical Consortium we can collect clinical information.
Jeffery Bennett:
Symptoms, feelings, things that you may not even associate with neurologic disease.
Dean Wingerchuk:
As well as to get biological samples, blood samples, for example, to study the science behind the disease.
Sarah Ellis:
And there was no doubt in my mind I was going to give up my blood whether I had to do it laying on the floor with them still … or however it may be.
Christine Ha:
And I know it’s not something that may benefit me directly, but it’s helping out the greater good.
Narrator:
By partnering up with our patients, by making a commitment to them to do rigorous science and then making a commitment to us to be involved in this process we’re going to be able to study new therapies in a much more efficient, much more streamlined process.
Sean Ellis:
Let’s pull our resources, pull our knowledge, and really help each other.
Silva Tenembeam:
The research, it cannot work alone. The clinician cannot work alone. And we have to work together.
Michael Yeaman:
This is more about creating something new that could not be created by any one person alone.
Sheila Sheckels:
Because it’s a team now, and it’s not just one person, one mother.
Sean Pittock:
The momentum that’s been provided by the Guthy-Jackson Charitable Foundation will ultimately result in us getting significant answers.
Narrator:
We are better off today than we were 36 months ago, and that is a very rare thing to say in medicine.
Dean Wingerchuk:
And what I’m hoping for is that we’ll have one of these game changing moments in our ability to treat people within NMO.
Brooke Thomas :
Yeah, definitely a lot of hope. I just hope it will come fast enough.
Kendall Clark:
I’m telling people get on it, get your blood drawn.
Dawn Sheckels:
Since we all have a part in this disease …
Rachel Tracy-Scheaffer:
So am I optimistic that this collaboration is going to lead to further greatness? Absolutely.