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  2005—2010

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

Name

Child/Adult

Date Submitted

Area of Body Affected

Location

James

Adult

12/1/10

Left foot

Abilene, TX

Chloe [Sammie and Neil, parents]

Child

11/5/10

Wrists, shoulders, fingers, neck, back

Cambridge, UK

Mike

Adult

10/3/10

Right leg—below knee, above ankle

Albuquerque, NM

Benjamin

Adult

9/30/10

Left foot, left hand

Fox Island, WA

Noralva

Adult

9/10/10

Right hand

Minneapolis, MN

Julie Anne

Adult

6/22/10

Right femur and tibia

and possibly right foot

Calgary, Alberta, Canada

Paul

Adult

5/25/10

Left ankle

Howell, MI

Marlene

Adult

5/19/10

Left foot

Pittsburgh, PA

Catrina

Adult

4/14/10

Right shoulder, arm, wrist and hand

Noble, MO

Chad

Adult

3/19/10

Right leg (knee to foot)

Denver, CO

Karen

Adult

3/18/10

Pelvic area

Kenosha, WI

Brittany

Adult

3/10/10

Left femur

Chandler, AZ

Donia

Adult

3/1/10

Right foot

Fayetteville, NC

Corey

Adult

2/11/10

Long bone of right arm

Spring Valley, CA

Amy

Adult

1/20/10

Right side of body

Charlottesville, IN

Brandon

Child

1/15/09

Update 1/13/10

Right foot

Moncton, New Brunswick,

Canada

Brett

Adult

12/15/09

Right knee and ankle

Emmanus, PA

William (Bill)

Adult

11/25/09

Right femur, second left toe, third right toe

Napier, Hawkes Bay,

New Zealand

Danielle

Adult

8/22/09

Right shoulder

Montauban South France

Ruth

Adult

8/21/09

Left ankle

Perth, WA, Australia

Shannon

Adult

7/13/09

Right hand

Jacksonville, FL

Jack

Adult

7/13/09

Left femur and hip

Lafayette, LA

Blanka

Adult

7/12/09

Left arm and hand

(Including images) 

Czech Republic

Diane

Adult

6/28/09

Left foot

Friendswood, TX

Ron

Adult

5/18/09

Middle finger, left hand

Sterling, VA

Glenn

Adult

Update 4/7/09

12/27/07

Left femur, knee and hip

Falls City, TX

Warren

Adult

3/24/09

Right tibia

Olympia, WA

Erica T.

 Adult

2/15/09

Left femur

Miami, FL

Samantha  D.

Adult

1/23/09

Right foot

Augusta, ME

Rakhi

Adult

1/8/09

Left femur

Bangalore, India

SF

Adult

12/19/08

Left ring finger

New York, NY

George

Adult

12/6/08

Arms and legs

Stockton, CA

Shelby (Jennifer, mother)

Child

10/27/08

Right leg

Watha, NC

Michael C.

Adult

10/27/08

Left leg and knee

Ft. Lauderdale, FL

Erika

Adult

10/23/08

Arm, hand and fingers

Ostersund, Sweden

Dave

Adult

10/8/08

Right leg, all bones from knee to ankle

Norco, CA

Hannah (Eva, mother)

Child

9/25/08

Left fingers, hand, forearm, elbow, upper arm and shoulder

New York

Eva-Marie

Adult

9/21/08

Left leg, from hip to toes

Frankfurt (near),

Germany

Griffin

Adult

8/20/08

Left leg (femur, patella, tibia, ankle)

San Diego, CA

Taewan

Adult

Update 7/15/08

5/25/03

Left ankle and knee

Busan, Republic of Korea

Suzanne

Adult

5/12/08

Right foot

Warwick, Queensland,

Australia

Inez

Adult

4/13/08

7th and 8th ribs on left side

Preston Lancashire England

Kara

Adult

2/20/08

Left forearm

Missoula, MT

Lance

Adult

12/12/07

Left leg

Brisbane, Queensland, Australia

Andrea

(Kandi, mother)

Child

11/21/07

Both feet, both knees, left hand and forearm

Santa Clara, CA

Alan

Adult

11/20/07

Right femur and knee

Birmingham, England

Louise

Adult

Update 11/14/07

9/6/03

 Right hip, right leg, right foot, right hand

New —Steubenville, OH

Pittsburgh, PA

Kris

Adult

11/7/07

Left foot

Lexington, NC

David

Adult

Update 11/6/07

1/29/02

Entire left side

 

Winder, Georgia

Samantha C.  (Angie, mother)

Child

10/25/07

Left knee

Fairland, Indiana

Kerstin B.

Adult

9/24/07

Both feet

Chandler, AZ

Rylee

(Jeff and Jill, parents

Child

9/6/07

Right pelvis and hip area, fibula, ankle and one toe

Egg Harbor, NJ

Sajjad

Adult

8/20/07

Right foot and leg up to hip

Dhaka, Bangladesh

Justin

Adult

Update 7/8/07

8/28/2001

Left leg

New —Upper Lake, CA

 San Francisco, CA

Frank

Adult

6/7/07

Right leg

New Lenox, IL

Brodie

(Paul, father)

Child

4/26/07

Right pelvis, knee, foot, and big toe

Mitcham, England

Keri

Adult

4//25/07

Left hand

Arlington, Texas

Susan P.

Adult

3/6/07

Left foot, tibia, knee, hip. Possibly, left arm and hand

Skive, Denmark

Susan B.

Adult

3/2/07

Left tibia

Peterborough, Ontario

Cindy

Adult

3/2/07

Left femur

Colorado Springs, Colorado

Jenny

Adult

2/22/07

Left humerus, right upper leg

Calgary, ALberta

Tammy

Adult

1/31/07

Right tibia

Tulsa, Oklahoma

Camilla

Adult

Update 1/12/07

4/13/05

Left hand, index and middle fingers and arm

East Sussex, UK

Lyn

Adult

1/14/07

Knee and foot

Christchurch,  New Zealand

Heather

Adult

1/10/07

Right knee, tibia-fibula, and foot

Coushatta, Louisiana

Tarra

Adult

12/19/06

Femur

Glasgow, Missouri

Nicholas

Child

12/13/06

Right ring finger

Adelaide,

South Australia

Jeffrey

Adult

11/30/06

Right shoulder

Cleveland, Ohio

Carter

Adult

11/8/06

Left arm

Noblesville, Indiana

Regina

Adult

11/6/06

Right foot

Dallas, Texas

Sophia B.

Adult

10/5/06

Both feet, legs, hips; left hand, arm and shoulders; right ring finger and pinky

Arlington, SD

Trina

Adult

8/28/06

Left femur

American Canyon, CA

Junhong

Child

8/8/06

Ankle and leg

Seoul, Korea Republic

Marie

Adult

Update:  8/7/06

2/11/05

Middle two fingers of left hand

Providence, RI

Katrina

Child

7/13/06

Left tibia

Manheim, PA

William M.

Adult

7/13/06

Right femur-hip joint and knee

Burlington, Ontario, Canada

Stephanie H.

Adult

6/14/06

Pelvis, right leg, right knee, lower back

Nederland, Texas

Nicole

Adult

Update:  6/7/06

10/29/03

Update:  Right hand, wrist and arm 

Right hand and arm

New Berlin, WI

Nadia 

(Mike, father)

Child

5/30/06

Right foot

Sheridan, Wyoming

Angela

Adult

5/19/06

Left tibia, foot and heel

Milwaukee, WI

Grace

(Amanda, mother)

Child

Update:  5/12/06

2/25/2001

Update:  Right hand, wrist, arm and shoulder

Right hand

New:  Encinitas, CA

Atlanta, Georgia

Robin

Adult

4/22/06

Right femur; right knee

Hagerstown, MD

Maren

Adult

4/16/06

Right pelvis and femur

Narvik, Norway

Jonathan

Adult

4/9/06

Right wrist, index finger and thumb; shoulder

Hereford, UK

Tami

Adult

Update:  3/26/06

6/27/04

Right foot

Millsboro, DE

Danielle

Adult

3/22/06

Left hand

Minneapolis, MN

Jennifer

Adult

3/13/06

Left ankle, both feet, hip and arm

Parker, CO

Marilyn

Adult

Update:  10/30/08

2/24/06

Distal fibula on right leg

Garrison, N.D.

Susan

Adult

2/22/06

Shoulders, arms, wrists, hands, legs

San Diego, CA

Helen

Adult

2/11/06

Right hip and femur

Karlskrona, Sweden

Michele

Adult

Update:    6/28/10, 1/15/06; 8/10/l03

3/5/03

Right ankle and foot

 

Edgewater, NJ

Beverly

Adult

Update:  1/11/06

4/7/2001

Left foot, femur and hip

 

Noble, IL

Kim

Adult

1/2/06

Right hand — middle finger and wrist

Powder Springs, GA

Beth

Adult

Update:  12/11/05

11/7/05

Right foot and ankle

 

Lexington, NC

James

Adult

10/21/05

Middle finger of right hand

Köln, Germany

Anthony

Adult

10/11/05

  Right Scapula, (L) 5th & 6th Ribs and (R) 3rd & 4th

Alaska

Alaina

Adult

9/16/05

Left hand and wrist

Charleston,

South Carolina

Roy

Adult

9/9/05

Left and right tibia and fibula; left foot; both hands

Ontario, Canada

Patrick (Pasquale)

Child

8/24/05

Left hip and left lower extremity

Harrison Township, Michigan

Donna

Adult

7/7/05

Left hip and foot

Austin, TX

Katie

Adult

7/5/05

Left hand

Memphis, TN

Stacey

                                       (Terry, mother)

Child

6/3/05

Right leg

Milltown, NJ

Stephanie

Adult

5/23/05

Left forearm

Seattle, WA

Lindy

Adult

5/21/05

Both shins

Johannesburg,  South Africa         

Cindy

Adult

5/14//05

Left femur

Colorado Springs, CO

Terri

Adult

5/13/05

Right shin just below the knee

Del Rio, TX

Tara Lynn

Adult

5/11/05

Right leg

Cardale, PA

Samuel

Adult

5/4/05

Knee and lower leg

Sedona, AZ

Johnny


(Glenda, mother)

Child

5/2/05

Right foot

Philadelphia, PA

Dawn D.

Adult

4/29/05

 Legs, feet, hands, right wrist, rib, back and skull

Toronto, Ontario   Canada

Wim

Adult

4/12/05

Right foot, tibia and fibula

Holland

Kent  H.

Adult

4/8/05

Right tibia

Kerrville, TX

Samantha Jo

Child

3/12/05

Left hand, arm, shoulder blade; a little in spine

Aurora, MO

Sheryl

Adult

3/10/05

Rib, vertebrae, spinal canal

Seattle, WA

Marie

Adult

2/11/05

Middle two fingers of left hand

Providence, RI

Pilar

Adult

2/11/05

Left leg and arms

Houston, TX

Peter

Adult

1/25/05

Second and third toe of left foot

Tauranga, New Zealand

Brenda

Adult

1/22/05

Right hand and wrist

Klamath Falls, OR

Sandra

Adult

1/19/05

Right side from hip down

Louisville, KY

Brad

(Lisa, mother)

Child

Update: 1/19/05

1/17/05

Right foot

 

Arnold, MD

Karl

Adult

1/5/05

Right foot and ankle

Winston Salem, NC