NIH Undiagnosed Diseases Program Patients: Paula Allen and Louise Benge

National Human Genome Research Institute

National Institutes of Health
U.S. Department of Health and Human Services


NIH Undiagnosed Diseases Program Patients: Paula Allen and Louise Benge

February 2, 2011
Paula Allen and Louise Benge

Introduction

This page includes video sound bites that provide patients' perspectives, by Paula Allen, 51, Brodhead, Ky., at left in blue, and Louise Benge, 56, Brodhead, Ky., at right in red. The interview with the patients was conducted Jan. 31, 2011 at the NIH Clinical Center, Bethesda, Md. Also included on the page is b-roll footage of Ms. Allen and Ms. Benge.

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Video Sound Bites

Interview with Paula Allen and Louise Benge
NIH Clinical Director
Bethesda, Maryland

Clip # Running Time Quotes: MPG File* MP4 File**
1 23 seconds

Mine started when I was about 25 years old. Like when I would walk for long periods of time, not even long periods of time, sometimes, the back of my legs would get hard as rocks. It hurt so bad, the calves of them. And then as the years went, it kind of progressed and got a little worse.

patients_01.mpg
(75.4 MB)
patients_01.mp4
(2.33 MB)
2 1 minute,
57 seconds

Well one doctor, did some blood pressure checks, or had some blood pressures check done, and said you have the legs of a 60 year old woman. Well, my mother was 60 at the time and she got around better than I did, so I'm think OK, so what are you telling me.

patients_02.mpg
(369 MB)
patients_02.mp4
(11 MB)
3 7 seconds

We're just hoping that they can find a cure and help us. That's what we are looking forward to.

patients_03.mpg
(25.5 MB)
patients_03.mp4
(691 KB)
4 50 seconds

The calves of your legs feel like stones or something and they hurt. I didn't wait to go to the doctor as long as she did because I knew what was coming, and they told me the same thing, that they could do surgery, but that it would have to be redone in five years, so I didn't even try it. And then when at night my feet started bothering me so bad that I would have to get up at night and walk around, three or four times, I was crying my feet hurt so bad, that's when Dr. Saylor sent me over to Lexington where she was going and we started the sodium thiosulfate.

patients_04.mpg
(160 MB)
patients_04.mp4
(4.37 MB)
5 27 seconds

Our one sister, most if it is in her knee ... its worse in her knees but started in her calves like ours did. And then we have a brother, he has a really hard time, but he takes it a lot better than we do. And then we have another brother, it started what two three years ago, so ...

patients_05.mpg
(90.1 MB)
patients_05.mp4
(2.68 MB)
6 1 minute,
52 seconds

Go slow. You might even have to stop in between. I had to go to Lexington last week for some training and a friend of mine went with me and we parked in the garage and had to walk down the sidewalk to the building, which isn't very afar. A block or so. Here I am way in the back, just taking my good sweet time because by the time I got to the building, my legs were hurting.

patients_06.mpg
(354 MB)
patients_06.mp4
(10.6 MB)
7 49 seconds

They done a lot of testing, a lot of things to try to figure out what was going on. They done genetic testing, and got blood from all our family ambers, including our parents. That's how they figure out it was genetic. And I am just really impressed with the things they have done, the things they are trying tod o and that they are trying to help us is awesome.

patients_07.mpg
(158 MB)
patients_07.mp4
(4.80 MB)
8 36 seconds

They said it was a genetic disease that, there was a gene that had an enzyme, that both parents had to have it and that the enzyme was not producing enough adenosine to keep the calcium out of our arteries, so it therefore caused a buildup, so they are looking for something that they can do to give us adenosine, but they have to give something with adenosine, if I understand it right, to try to help us.

patients_08.mpg
(115 MB)
patients_08.mp4
(3.32 MB)
9 23 seconds

Shocker (to find out it was a new disease). Yeah, it was a shock. I got excited when they said they hoped that they could find something to help take care of it. He said it would be a while, but you know, if they can find it. Wow! It would be a celebration.

patients_09.mpg
(76.2 MB)
patients_09.mp4
(2.39 MB)

* The MPG files are meant to be downloaded to your local computer. Please see Instructions for Downloading.
** The MP4 files are meant to be viewed in your Web browser. You do not need to download them to your local computer.

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B-Roll Footage

Clips of Paula Allen and Louise Benge

Clip # Running Time Description of Footage MPG File* MP4 File**
1 23 seconds Paula and Louise walking down the hall, out of frame B-Roll 01 MPG
(37.3 MB)
B-Roll 01 MP4
(1.34 MB)
2 9 seconds

Paula in wheelchair leaving CT scanner room and out of frame

B-Roll 02 MPG
(31 MB)
B-Roll 02 MP4
(1.10 MB)
3 43 seconds Paula laying on the CT scanner bed, and then moving into the scanner tube, and coming back out again. B-Roll 03 MPG
(137 MB)
B-Roll 03 MP4
(4.74 MB)
4 37 seconds

Wide shot of CT scanner room with patient on table in b.g., control computer and screens in foreground. To health professionals leaving the scanner room.

B-Roll 04 MPG
(118 MB)
B-Roll 04 MP4
(4.51 MB)
5 6 seconds

Over-the-shoulder of CT operator at control computer

B-Roll 05 MPG
(21.6 MB)
B-Roll 05 MP4
(754 KB)
6 23 seconds

Push to close-up of patient in CT scanner and then pull back out to control room

B-Roll 06 MPG
(74.7 MB)
B-Roll 06 MP4
(2.80 MB)
7 1 minute
1 second

Wide shot of two health professionals in scanner room with Paula Allen on table, truck right.

B-Roll 07 MPG
(193 MB)
B-Roll 07 MP4
(7.44 MB)
8 1 minute

Close-up of CT computer screen and some of the sequence of taking a CT scan, with nat. sound.

B-Roll 08 MPG
(190 MB)
B-Roll 08 MP4
(7.31 MB)
9 30 seconds

Louise having EKG leads attached, and then ultrasound of foot, with nat. sound.

B-Roll 09 MPG
(377 MB)
B-Roll 09 MP4
(14.1 MB)
10 2 minutes Paula goes into the CT tube, from foot view. B-Roll 10 MPG
(19.5 MB)
B-Roll 10 MP4
(662 kB)
11 6 seconds Close-up of ultrasound probe on foot B-Roll 11 MPG
(98 MB)
B-Roll 11 MP4
(3.72 MB)
12 3 seconds Close-up of Computer Screen B-Roll 12 MPG
(13.1 MB)
B-Roll 12 MP4
(401 KB)
13 1 second Close-up of Computer Screen B-Roll 13 MPG
(5.57 MB)
B-Roll 13 MP4
(102 KB)
14 30 seconds More ultrasound probe on foot B-Roll 14 MPG
(96.5 MB)
B-Roll 14 MP4
(3.67 MB)
15 1 minute,
10 seconds
Louise starts on the treadmill. B-Roll 15 MPG
(221 MB)
B-Roll 15 MP4
(8.54 MB)
16 35 seconds Tilt up to Louise and technician at treadmill, to tilt down to cu feet. B-Roll 16 MPG
(112 MB)
B-Roll 16 MP4
(4.26 MB)
17 15 seconds Wide shot of Louise from the back, three shot, various, tilt up and down. B-Roll 17 MPG
(49.8 MB)
B-Roll 17 MP4
(1.82 MB)

* The MPG files are meant to be downloaded to your local computer. Please see Instructions for Downloading.
** The MP4 files are meant to be viewed in your Web browser. You do not need to download them to your local computer.

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Instructions for Downloading

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Video Specifications

These standard definition videos were shot on a Sony 570 DVCAM and edited at full resolution in an Avid Media Composer. The video clips were exported as QuickTime Movies, using the QuickTime H.264 codec, with the following specifications:

  1. 720 x 486 pixels frame size
  2. 30 frames per second
  3. RGB color, compressed at millions of colors, for best compression.
  4. 44.1 kHz, uncompressed audio, 2 channels of pan-centered mono audio.

NHGRI presents these full-resolution video clips as an experiment. If you like this approach or had problems, have thoughts or comments, please send them to Larry Thompson, NHGRI Communications Director, at thompsl@mail.nih.gov.

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Terms of Use

These clips were developed for use by broadcast media to assist with the preparation of news stories. However, all government-produced video is in the public domain and copyright free. Anyone is freely able to use these clips. These clips were created by Genome Productions, a part of the Communications and Public Liaison Branch of the National Human Genome Research Institute. As a courtesy, it is requested that the an appropriate acknowledgement be given: "Courtesy: National Human Genome Research Institute."

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Last Reviewed: March 12, 2012