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—2016 Melorheostosis Association.  All rights reserved.

Personal Histories  2011 – 2017

Personal Histories 2011 - 2017    To read Personal Histories from 2001 - 2004, click here

                                                                  To read Personal Histories from 2005 - 2010, click here

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

Name

Date Submitted

Child/

Adult

Area of Body Affected

Location

Sinead

7-12-17

Adult

Right leg

Ireland

Petra

6-29-17

Adult

Right tibia

Mayfield, KY

John

3-1-17

Adult

Hands and fingers

Waiehu, Maui, Hawaii

Sailesh

12-26-16

Adult

Left leg, hip, knee, ankle

London, England

Lorenzo

(Mother: Trisha)

7-25-16

Child

Left femur, right tibia

Kingsville, TX

Chantal

3-23-16

Adult

Right hand

Burlington, Ontario, Canada

Lynne

Originally posted 8-5-14

Adult

Right tibia, big toe and ankle

 Gladstone, Oregon

Vicky

(Mother: Paola)

2-24-16

Child

Left foot

Essex, England

Stan

1-7-16

Adult

Left hand, wrist, shoulder blade and

under left arm

St. Charles, Missouri

Savannah

12-22-15

Adult

Right tibia on lower leg

Nashville, TN

Rachel

12-9-15

Adult

Right foot

Auckland, New Zealand

Markku

11-1-15

Adult

 Both condyles of left femur and tibia

Helsinki, Finland

Kalynn

10-1-15

Adult

Left Hand; 5th & 3rd Metacarpal                       Right Hand; 5th & 3rd Metacarpal

 Phoenix, AZ

Emily    (Parents: Steve and Nichole Powers; Jeremy Huyck)

9-14-15

Update: 12-29-15

Teenager

5 & 7 right rib and vertebra

 Salem,Oregon

Mirko

6-8-15

Adult

 Both femurs; third metatarsal bone of III toe of left foot

Sovramonte (Province of Belluno, Italy)

Samantha

5-27-15

Adult

4th Metatarsal

Rochdale, Manchester

UK

Bret

5/20/15

Adult

Right leg

Moses Lake WA

Robert/Bobby (Parents: Julie and Bob)

1/8/15

Child

Left metatarsal and tibia

Havertown, PA

Ryan

1/4/15

Adult

Right ankle

Fort McMurray

Alberta Canada

Kirsi

12/28/14

Adult

Right leg and foot

Tampere, Finland

Diane

10/2/14

Update to 8/28/09

Adult

Left foot, middle toe

Friendswood, TX

Cortney

8/21/14

Update to 9/17/11

Adult

Right hand, fifth metacarpal

Phoenix, AZ

Macon (Joe)

6/19/14

Adult

Hands, forearms, legs

Arlington, TX

Mary

6/7/14

Adult

Right side of body

Indianapolis, IN

Vicki

4/11/14

Adult

Right forearm

Maryland, USA

Sherry

4/7/14

Adult

Left ankle and leg

Livingston, TX

Shelbi

4/2/14

Adult

Left knee and shin bone. Left foot and three toes.

Right side of face and skull base.

Benton, AK

Julie McD

3/23/14

Adult

Right hip down to my right foot

 Franklin, PA

Gillian

3/1/14

Adult

Left heel bone

Derby, UK

Justin G.

1/23/14

Adult

Left foot

Jackson, MS

Paul R.

12/30/13

Adult

Third finger, left hand and small finger

(see x-ray from May 2013)

 Merthyr Tydfil, South Wales, UK

 Jennifer

12/21/13

Adult

Right knee, Right hip, Pelvis

Cushing, Minnesota

Sasheena

11/10/13

Adult

Left hand: 3rd Metacarpal and 4 carpal bones: Lunate, Hamate, Capitate, and Triquetrum

West of Phoenix, AZ

Jennifer

11/10/13

Adult

Right leg and foot

Western Massachusetts

Ken H.

11/7/13

Adult

Right hand

La Harpe, Illinois

Ashley

10/31/13

Adult

Left index finger

Barrie, ON Canada

Aaron

Parents: Alejandro and Angela Aluisa Michuy   

 

10/25/13

Child

            Arm and right hand, left leg and foot

Guaranda-Ecuador

M.M.

10/24/13

Adult

               Right thumb and pinky finger

Portland, OR

Heather

8/27/13

Adult

         Left Arm (both bones from elbow to wrist)

Franklin, TN

Ryanne

8/11/13

Adult

Hands, lefgt and right

Haarlem, Nederlan

Lourdes

7/31/13

Adult

Right knee

Puerto Rico

Carl

6/27/13

Adult

Left 8th rib

Clarksville, TN

Angela P.

6/13/13

Adult

Left fibula

Dragasani-Valcea,

Romania

Beth B.

4/13/13

Adult

Right ankle

Albany, GA

Ruth Z.

4/3/13

Adult

Left ulna, left wrist, left fingers

Fullerton, CA

Britni.

(Carolyn,  mother)

3-16-13

Child

Right foot and leg

Dartmouth NS, Canada

Tracy K.

11-27-12

Adult

Left fibula

Terrace, British Columbia, Canada

Donna N.

9/24/12

Adult

Right leg, foot and shoulder

Cary, North Carolina

Amit

8/16/12

Adult

Left hand

Shanghai, PR CHINA

Karen M.

7/15/12

Adult

Left foot and ankle

Cambridge, England

Kelsey

7/14/12

Adult

Right foot

Anchorage, Alaska

Quincy

(by parents: Ballard and Tanda)

4/27/12

Child

Left leg and hip

Battle Creek, Iowa

Rinus

4/8/12

Adult

Hand

Holland

Lynette

3/27/12

Adult

Hands, right side of body

Australia

Rosemary

3/21/12

Adult

Left ankle

Melbourne Victoria Australia

Tracy

3/7/12

Adult

Left and right arms and hands

Minnesota

Julie

2/23/12

Adult

Right clavicle

Sioux Falls, SD

Robert

2/18/2012

Adult

Left foot and lower leg

Maryland

Darlene

1/24/12

Adult

Tibia and femur of left leg

Port  St Lucie, FL

Donal

(Ronan and Niamh, parents

1/22/12

Child

Right foot

Dublin, Ireland

Laura

1/15/12

Adult

Left ring finger /hand

Crystal Lake, IL

Linda

1/7/12

Adult

Right Foot

St Louis, MO

Susan

12/8/11

Adult

Left wrist, hand, fingers

San Diego, CA

Judy

12/2/11

Adult

Right finger and pinkie finger on left hand

Ashburn, VA

David

11/01/11

Adult

Right Upper leg, hip to knee

Rochester, NY

Kelly

11/10/11

Adult

Right hand, right ulna, right shoulder

Lewiston, Maine

Linda

11/3/11

Adult

Right leg, knees; possibly hands

Las Vegas, NV

Cassandra

10/22/11

Adult

Right ankle, top of foot to second and third toe

Corpus Christi, TX

Kerry

10/20/11

Adult

Right humerus, radius, ulna, wrist, index finger   and thumb

Hot Springs , AR

Maria

10/10/11

Adult

Left leg

Davie, FL

Brad

10/5/11

Adult

Right fingers, hand, arm

Manning, SC

Mika

9/17/11

Adult

Left arm and leg

Finland

Ralph

8/23/11

Adult

First and second rib on right side;

First joint on index finger of right hand

Gainesville, FL

Melanie

8/15/11

Adult

Right foot

Sumter, SC

Dipankar

7/3/11

Adult

Right leg

Pune, Maharashtra,

India

Jody C.

5/17/11

Adult

Left forearm

Raleigh, NC

Rosana

5/12/11

Adult

Left leg

Argentina

Cortney

4/27/11

Adult

Right hand (5th metacarpal)

Chandler, AZ

Kenneth

4/21/11

Adult

Right side outer wrist including pinky and ring fingers

New Bedford, MA

Susan

4/5/11

Adult

Right hand and wrist

Edinburgh, Scotland

Jessica

3/1/11

Adult

Femur

Marysville, OH

Annette

1/22/11

Adult

Right tibia

Bothell, WA