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Living with NMO

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.

 

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