Personal Histories

Shared by Melorheostosis Patients

Disclaimer: The following information is shared by fellow melorheostosis patients about their own personal experience in dealing with this rare condition.  It is in no way intended as a recommendation of any particular treatment, surgery, therapy or course of action, nor as a substitute for the expertise and judgment of your physician or other health care professional.  

© Copyright 2001—2017  Melorheostosis Association.  All rights reserved.

Personal Histories 2001—2004

Personal Histories 2001 – 2004   To read Personal Histories from 2005 - 2010, click here

                                                               To read Personal Histories from 2011-2017 click here

© Copyright 2001—2017 Melorheostosis Association.  All rights reserved.

  To read Personal Histories from 2005—2008, click here 

   To read Personal Histories from 2011 -2017, click here                                               

Name

Child/Adult

Date Submitted

Area of Body Affected

Location

Heather

Adult

12/16/04

Left arm

Roanoke, VA

Michelle D.

Adult

12/5/04

Left forearm and upper arm

Lafayette, LA

Ashlea

(Mary, mother)

Child

11/27/04

Left leg, foot, hip; right knee

Princewick, WV

Elaine

 (Phyllis, mother)

Child

11/24/04

Left foot and leg

Fort Polk, LA

Jonathan

(Angela, mother)

Child

10/13/04

Right foot, leg and pelvis; mandible

Tulsa, Oklahoma

William

Adult

9/25/04

Left hip to left knee

Somerset, Colorado

Elizabeth

 (Marcellene, mother)

Child

9/24/04

Hips, right leg and foot

Dallas, Texas

Heidi

Adult

7/30/04

Left wrist, arm and elbow; some evidence in shoulder

 

Nancy

Adult

7/15/04

Left foot and ankle

Falls Church, Virginia

Carolyn

Adult

 6/20/04

Left leg

     Baird, Texas

Dawn

Adult

6/12/04

Both legs

Flemington, West Virginia

Maria

Adult

4/28/04

Right femur and right knee 

New  information added 6/29/04

Philippines

Kent

Adult

4/25/04

Left foot, ankle, leg and hip

Loganville, GA

Hunter 

(Donna, mother)

Child

3/22/04

Left foot and left lower leg

New  information added 4/5/04

Milan, TN

Sharon

Adult

3/5/04

Right hand, arm, shoulder and collar bone

Lake Worth, FL

Liz

Adult

3/5/04

Middle finger of right hand

UK, Stourbridge, West Midlands

Julie

Adult

3/1/04

Right hip, femur and knee

Franklin, PA

William

Adult

1/16/04

Left leg from hip to knee

Hoffman Estates, IL

Azizul

Adult

1/13/04

Left foot (ankle)

Perlis, Malaysia

Graham

Adult

1/10/04

Right hand and middle finger

Reading, England

Chip

(Melvalina,mother)

Child

1/1/04

Right foot, leg, hip and spine  (photos included)

Bedford, KY

Marcia

Adult

12/13/03

Middle finger, left hand

Pocos de Caldas, MG, Brazil

Sophie

Adult

12/5/03

Left hand and arm

Montreal, Quebec

Brandie

Adult

12/1/03

UPDATE 8/27/10

Right leg/foot; left foot; rt. hip; lower back

St. Paul, MN

Kathleen C.

Adult

11/29/03

Middle finger, left hand

Nottingham, England

Sally

Adult

10/12/03

Right foot and ankle

Cincinnati, OH

Andrew

Adult

10/6/03

Left foot

United Kingdom

Kerstin

Adult

9/12/03

Right foot

Chandler, AZ

Rebecca

Adult

9/1/03

Left and right tibias and femurs, left ulna, right humerus

Meriden, CT

Jennifer M.

Adult

8/14/03

Middle finger, left hand

Cincinnati, OH

Amanda H.

Adult

7/20/03

Left foot and ankle, going up left leg

Baltimore, MD

Shawna

Adult

4/14/03

Right hand, wrist, forearm, elbow; joints on right side of body

Bountiful, Utah

Michelle

Adult

3/7/03

Right foot

Fareham, Hampshire, England

Jody

(Jill, mother)

Child

2/24/03

Left arm and hand

Portland, Oregon

Pamula

Adult

2/6/03

Left tibia, fibula

Madison Heights, VA

Michael

Adult

1/29/03

Left leg and foot

Stevens Point, WI

Elaine

Adult

1/22/03

Foot, femur, hand

 Hamden, Connecticut

Steve

Adult

1/20/03

Right hip to foot

Westport, CT

Krystal Austin

(Terry, mother)

Adult

11/1/02

Foot

Brownsville, TN

Jessica 

(Becky, mother)

Child

9/12/02

Hand, wrist, forearm and shoulder

Fort Madison, Iowa

Elizabeth

Adult

9/3/02

Left knee

Reading, Berkshire, UK

Maria Daniela

Adult

8/30/02

Right leg

Santa Rosa, Argentina

Steve

Adult

8/20/02

Left knee

San Diego, CA

Nadia

Adult

8/14/02

Right leg 

Dundee, Scotland

Angela

Adult

8/8/02

Left tibia, left foot and heel

Milwaukee, WI

Aaron

Adult

7/8/02

Foot and ankle

Brooklyn, New York

Jennifer

Adult

6/29/02

Right femur and patella

Holyoke, Massachusetts

Laurel

Adult

6/8/2002

Left foot

Lewisburg, Tennessee

Theresa

Adult

6/7/2002

Right forearm

Hot Springs, Arkansas

Mckenna

Adult

5/20/2002

Whole body except skull and face bones

 Shelton, Washington

David

Adult

5/9/2002

Right index finger

Gloucestershire, England

Bobbie

Adult

4/28/2002

Both feet, left leg and hip

Granite City, Illinois

Hanna

Adult

4/16/2002

Left knee; shinbone downward 

(Personal history in Portuguese, with English translation)

Stockholm, Sweden

Laurie

Adult

4/14/2002

Left leg (tibia)

Seattle, Washington

Lizzie

Child

3/10/2002

Left arm from shoulder to fingers

Hereford, England

Janelle

Adult

3/7/2002

Left shoulder, arm, wrist and hand

Perth, Western Australia

Mike

Adult

2/24/2002

Right leg (femur)

Ottawa, Canada

Floyd

Adult

2/11/2002

Spine, pelvis, right femur, left lower leg, big toes; probably hands and wrists (possible osteopoikilosis and melorheostosis)

San Fidel, New Mexico

Amanda 

Child

1/26/2002

Right leg (tibia)

Little Elm, Texas

Samantha

(Virginia, mother)

Child

1/9/2002

     Left hand, wrist, arm, elbow                             Update: shoulder blade and a little in spine

       New  information added 3/05

Denison, Texas

New — Aurora, MO

Mari

Adult

1/8/2002

Left knee, ankle, foot; right hip   

New  information added 3/25/02

Bismarck, No. Dakota

Claudia

Adult

12/4/2001

Left index finger

Albertville, Minnesota

Fritz

Adult

11/9/2001

Left arm, hand and shoulder

(esp. wrist and thumb-joint)

Braunschweig, Germany

Kevin

Adult

10/15/2001

Both lower legs, arms, base of skull

Lansford, Pennsylvania

Carla

Adult

8/28/2001

Both shoulders

Boston, Massachusetts

Joyce

Adult

8/27/2001

Both feet, legs, left hip

New  information added  8/7/02

Seattle, Washington

Dreama

Adult

7/18/2001

Left foot and leg 

New  information added 2/28/05

Burbank, Washington

Jama

Adult

6/22/2001

Right foot

Chattanooga, Tennessee

Andrea

Adult

6/15/2001

Right hip

Riviera Beach, Florida

Linda

Adult

6/7/2001

Right hip, entire right leg and foot

Florence, Kentucky

Lisa

Adult

6/5/2001

Bone between wrist and elbow, left hand

St. Louis, Missouri

Monica

(Lyn, mother)

Child

2/18/2001

Bilateral, Upper Extremities

Photos Added  4/6/2001;  Update Regarding Surgery Added 10/2001

St. Louis,  Missouri

Wilbur

Adult

4/6//2001

Right leg; pelvis; spine

Wyoming, Minnesota

Rachel (Cindy, Jeff, parents)

Child

3/31/2001

Right big toe area; right knee; pelvis

Swannanoa, No. Carolina

Guy

Adult

3/27/2001

Left knee and foot

Dallas, Texas

Paul

Adult

3/26/2001

Right leg (femur and tibia)

Melbourne, Australia

Yuriy

Adult

3/24/2001

Right arm and wrist

Berwyn, Illinois

Bob

Adult

3/19/2001

Left foot

West Virginia

Hannah 

(Debbie, mother)

Child

2/26/2001

Left hand/wrist; hot spots in both arms and legs

Dothan, Alabama

Kristie

Adult

2/26/2001

Left foot

Delight, Arkansas

Alice

Adult

2/23/2001

Left arm and shoulder (melorheostosis and osteopoikilosis)

Lansing, Michigan

Jo

Adult

2/21/2001

Both Legs, Right Upper Arm

Watsonville, California

Kasey

Adult

2/21/2001

Right hand and wrist

Columbus, Ohio

Roxanne

Adult

2/21/2001

Right leg from the knee down

Laurel, DE

Kathleen

Adult

2/21/2001

Right hand, bilateral arms and shoulders

New York, NY

Dayne

(Carla, mother)

Child

2/20/2001

Right side, upper and lower

Winston, GA

Mishka

(Lydia, mother)

Child

2/18/2001

Left Leg (upper and lower)

Madison, WI