PRP Survival Guide

PRP Survival Guide

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THE QUESTION

Carolyn D (Willis, Texas) authored the following post (dated January 20, 2023) to members of the PRP Support Group:

“Is there any data on how many PRP patients there are now in the world? Just curious. When I tell people about PRP they sometimes ask how many there of us.”  Member-only link to Carolyn’s post

THE ANSWER

Let’s start with a definition. “Prevalence, sometimes referred to as prevalence rate, is the proportion of persons in a population who have a particular disease or attribute at a specified point in time or over a specified period of time. (source: CDC)
     
Dr. Andrew Griffiths
The prevalence rate for pityriasis rubra pilaris was formally presented by Dr. Andrew Griffiths to members of the British Association of Dermatology assembled in Liverpool, England in March 2003  Dr. Griffiths reflected on 35 years of diagnosing, treating and researching pityriasis rubra pilaris. He unilaterally set the PRP prevalence rate for PRP at one in 400,000.
 
While Griffiths’ methodology can be subject to debate, dermatologists worldwide have accepted his estimates as the Gold Standard.
 
What is the PRP worldwide population?
 
Murray R (British Columbia, Canada) commented: “If you assume the 1 in 400,000 ratio and the world population is eight billion (at the end of 2021), then there are approximately 20,000 of us in the world. We are pretty exclusive club that nobody wants to join.”
 
PRP Patient Population: Estimated versus Actual
 
There is a BIG difference between HAVING PRP and being DIAGNOSED with PRP. The U.S. population at the end of 2022 was 336,509,346. Based on the 1:400,00 prevalence rate, there should be an estimated 841 “active” PRP patents. According to the PRP Global Database, however, the number of PRP patients in the U.S. is 925  We estimate that at least 10% are patients who no longer consider themselves “active”.
The following spreadsheet compares estimated PRP prevalence in the United States versus the actual PRP  patient population based on the PRP Global Database  An international comparison follows.
 
      How does the “estimated” prevalence where you live compare with the “actual”  prevalence?  Share what you learn with others.
   During my “active” PRP journey (circa 2012-2014) I had  a collection of talking points that included the following:
“PRP has a prevalence rate of one in 400,000. There are and estimated 812 PRP patients United States, 69 in Texas and I’m one of 16 in the the Dallas-Fort Worth area.” I made sure I sounded like a subject matter expert because because, when it came to my version of PRP, I was just that!

“Estimated” PRP Prevalence vs “Actual”PRP Support Group patient Population

State

2022 Population

Estimated Prevalence

PRP Global Database

Alabama

5,074,296

13

16

Alaska

733,583

2

1

Ariziona

7,359,197

18

18

Arkansas

3,045,637

8

7

Caiifornia

39,029,342

98

97

Colorado

5,839,926

15

15

District of Columbia

3,626,205

9

2

Connecticut

1,018,396

3

12

Delaware

671,803

2

3

Florida

22,244,823

56

83

Georgia

10,912,876

27

27

Hawaii

1,440,196

4

3

Idaho

1,939,033

5

10

Illinois

12,582,032

31

28

Indiana

6,833,037

17

23

Iowa

3,200,517

8

10

Kansas

2,937,150

7

14

Kentucky

4,512,310

11

12

Louisiana

4,590,241

11

7

Maine

1,385,340

3

6

Maryland

6,164,660

15

18

Massachusetts

6,981,974

17

26

Michigan

10,034,113

25

24

Minnesota

5,717,184

14

19

Mississippi

2,940,057

7

7

Missouri

6,177,957

15

18

Montana

1,122,867

3

3

Nebraska

1,967,923

5

3

Nevada

3,177,772

8

9

New Hampshire

1,395,231

3

3

New Jersey

9,261,699

23

20

New Mexico

2,113,344

5

5

New York

19,677,151

49

47

North Carolina

10,698,973

27

39

North Dakota

779,261

2

3

Ohio

11,756,058

29

27

Oklahoma

4,019,800

10

10

Oregon

4,240,137

11

19

Pennsylvania

12,972,008

32

43

Puerto Rico

3,221,789

8

2

Rhode Island

1,093,734

3

1

South Carolina

5,282,634

13

22

South Dakota

909,824

2

0

Tennessee

7,051,339

18

14

Texas

30,029,572

75

65

Utah

3,380,800

8

3

Vermont

647,064

2

1

Virginia

8,683,619

22

30

Washington

7,785,786

19

25

West Virginia

1,775,156

4

1

Wisconsin

5,892,539

15

21

Wyoming

581,381

1

3

         TOTAL

336,509,346

841

925

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“Estimated” PRP Prevalence vs “Actual” PRP Support Group Patient Population

Country

2022 Population

Estimated Prevalence

PRP Global Database

Argentina

45,195,744

113

3

Australia

25,499,884

64

131

Bangladesh

164,689,383

412

2

Belgium

11,589,623

29

11

Bolivia

11,673,021

29

1

Brazil

212,559,417

531

5

Bulgaria

6,948,445

17

2

Canada

37,742,154

94

84

Chile

19,116,201

48

1

China

1,439,323,776

3,598

1

Colombia

50,882,891

127

3

Costa Rica

5,094,118

13

2

Croatia

4,105,267

10

1

Cuba

11,326,616

28

1

Czech Republic

10,708,981

27

3

Denmark

5,792,202

14

7

Ecuador

17,643,054

44

1

El Salvador

6,486,205

16

1

Finland

5,540,720

14

4

France

65,273,511

163

8

Georgia

3,988,167

10

1

Germany

83,783,942

209

13

Greece

10,423,054

26

1

Haiti

11,402,528

29

1

Hong Kong

7,496,981

19

1

Hungary

9,660,351

24

3

India

1,380,004,385

3,450

6

Indonesia

273,523,615

684

3

Iraq

40,222,493

101

1

Ireland

4,937,786

12

9

Israel

8,655,535

22

3

Italy

60,461,826

151

9

Kenya

53,771,296

134

1

Luxembourg

625,973

2

1

Malaysia

32,365,999

81

2

Mexico

128,932,753

322

5

Myranmar

54,409,800

136

1

Nepal

29,136,808

73

1

Netherlands

17,134,872

43

20

New Calidonia (Fr)

285,498

1

1

New Zealand

4,822,233

12

15

Norway

5,421,241

14

10

Pakistan

220,892,340

552

2

Panama

4,314,767

11

1

Peru

32,971,854

82

2

Philippines

109,581,078

274

3

Poiand

37,846,611

95

8

Portugal

10,196,709

25

2

Qatar

2,881,053

7

1

Russia

145,934,462

365

1

Sinapore

5,850,342

15

2

Slovakia

5,459,642

14

1

Slovenia

2,078,938

5

1

South Africa

59,308,690

148

7

South Korea

51,269,185

128

1

Spain

46,754,778

117

5

Sweden

10,096,265

25

19

Switzerland

8,654,622

22

7

Taiwan

23,816,775

60

1

Trinidad, West indies

1,399,488

3

1

Turkey

84,339,067

211

5

United Arab Emerates

9,890,402

25

3

United Kingdom

67,886,011

170

185

Yemen

29,825,964

75

1

Zimbabwe

14,862,924

37

2

     TOTAL

4,960,617,672

13,412

622