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—2020 Melorheostosis Association. All rights reserved. |
Personal Histories 2005—2010 |
Personal Histories 2005– 2010 To read Personal Histories from 2001 - 2004, click here To read Personal Histories from 2011 -2020 click here
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© Copyright 2001—2022 Melorheostosis Association. All rights reserved. |
Name |
Child/Adult |
Date Submitted |
Area of Body Affected |
Location |
Adult |
12/1/10 |
Left foot |
Abilene, TX |
|
Chloe [Sammie and Neil, parents] |
Child |
11/5/10 |
Wrists, shoulders, fingers, neck, back |
Cambridge, UK |
Adult |
10/3/10 |
Right leg—below knee, above ankle |
Albuquerque, NM |
|
Adult |
9/30/10 |
Left foot, left hand |
Fox Island, WA |
|
Adult |
9/10/10 |
Right hand |
Minneapolis, MN |
|
Adult |
6/22/10 |
Right femur and tibia and possibly right foot |
Calgary, Alberta, Canada |
|
Adult |
5/25/10 |
Left ankle |
Howell, MI |
|
Adult |
5/19/10 |
Left foot |
Pittsburgh, PA |
|
Adult |
4/14/10 |
Right shoulder, arm, wrist and hand |
Noble, MO |
|
Adult |
3/19/10 |
Right leg (knee to foot) |
Denver, CO |
|
Adult |
3/18/10 |
Pelvic area |
Kenosha, WI |
|
Adult |
3/10/10 |
Left femur |
Chandler, AZ |
|
Adult |
3/1/10 |
Right foot |
Fayetteville, NC |
|
Adult |
2/11/10 |
Long bone of right arm |
Spring Valley, CA |
|
Adult |
1/20/10 |
Right side of body |
Charlottesville, IN |
|
Child |
1/15/09 Update 1/13/10 |
Right foot |
Moncton, New Brunswick, Canada |
|
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 |
Adult |
8/22/09 |
Right shoulder |
Montauban South France |
|
Adult |
8/21/09 |
Left ankle |
Perth, WA, Australia |
|
Adult |
7/13/09 |
Right hand |
Jacksonville, FL |
|
Adult |
7/13/09 |
Left femur and hip |
Lafayette, LA |
|
Adult |
7/12/09 |
Left arm and hand (Including images) |
Czech Republic |
|
Adult |
6/28/09 |
Left foot |
Friendswood, TX |
|
Adult |
5/18/09 |
Middle finger, left hand |
Sterling, VA |
|
Adult |
Update 4/7/09 12/27/07 |
Left femur, knee and hip |
Falls City, TX |
|
Adult |
3/24/09 |
Right tibia |
Olympia, WA |
|
Adult |
2/15/09 |
Left femur |
Miami, FL |
|
Adult |
1/23/09 |
Right foot |
Augusta, ME |
|
Adult |
1/8/09 |
Left femur |
Bangalore, India |
|
Adult |
12/19/08 |
Left ring finger |
New York, NY |
|
Adult |
12/6/08 |
Arms and legs |
Stockton, CA |
|
Child |
10/27/08 |
Right leg |
Watha, NC |
|
Adult |
10/27/08 |
Left leg and knee |
Ft. Lauderdale, FL |
|
Adult |
10/23/08 |
Arm, hand and fingers |
Ostersund, Sweden |
|
Adult |
10/8/08 |
Right leg, all bones from knee to ankle |
Norco, CA |
|
Child |
9/25/08 |
Left fingers, hand, forearm, elbow, upper arm and shoulder |
New York |
|
Adult |
9/21/08 |
Left leg, from hip to toes |
Frankfurt (near), Germany |
|
Adult |
8/20/08 |
Left leg (femur, patella, tibia, ankle) |
San Diego, CA |
|
Adult |
Update 7/15/08 5/25/03 |
Left ankle and knee |
Busan, Republic of Korea |
|
Adult |
5/12/08 |
Right foot |
Warwick, Queensland, Australia |
|
Adult |
4/13/08 |
7th and 8th ribs on left side |
Preston Lancashire England |
|
Adult |
2/20/08 |
Left forearm |
Missoula, MT |
|
Adult |
12/12/07 |
Left leg |
Brisbane, Queensland, Australia |
|
Child |
11/21/07 |
Both feet, both knees, left hand and forearm |
Santa Clara, CA |
|
Adult |
11/20/07 |
Right femur and knee |
Birmingham, England |
|
Adult |
Update 11/14/07 9/6/03 |
Right hip, right leg, right foot, right hand |
New —Steubenville, OH Pittsburgh, PA |
|
Adult |
11/7/07 |
Left foot |
Lexington, NC |
|
Adult |
Update 11/6/07 1/29/02 |
Entire left side
|
Winder, Georgia |
|
Child |
10/25/07 |
Left knee |
Fairland, Indiana |
|
Adult |
9/24/07 |
Both feet |
Chandler, AZ |
|
(Jeff and Jill, parents |
Child |
9/6/07 |
Right pelvis and hip area, fibula, ankle and one toe |
Egg Harbor, NJ |
Adult |
8/20/07 |
Right foot and leg up to hip |
Dhaka, Bangladesh |
|
Adult |
Update 7/8/07 8/28/2001 |
Left leg |
New —Upper Lake, CA San Francisco, CA |
|
Adult |
6/7/07 |
Right leg |
New Lenox, IL |
|
Child |
4/26/07 |
Right pelvis, knee, foot, and big toe |
Mitcham, England |
|
Adult |
4//25/07 |
Left hand |
Arlington, Texas |
|
Adult |
3/6/07 |
Left foot, tibia, knee, hip. Possibly, left arm and hand |
Skive, Denmark |
|
Adult |
3/2/07 |
Left tibia |
Peterborough, Ontario |
|
Adult |
3/2/07 |
Left femur |
Colorado Springs, Colorado |
|
Adult |
2/22/07 |
Left humerus, right upper leg |
Calgary, ALberta |
|
Adult |
1/31/07 |
Right tibia |
Tulsa, Oklahoma |
|
Adult |
Update 1/12/07 4/13/05 |
Left hand, index and middle fingers and arm |
East Sussex, UK |
|
Adult |
1/14/07 |
Knee and foot |
Christchurch, New Zealand |
|
Adult |
1/10/07 |
Right knee, tibia-fibula, and foot |
Coushatta, Louisiana |
|
Adult |
12/19/06 |
Femur |
Glasgow, Missouri |
|
Child |
12/13/06 |
Right ring finger |
Adelaide, South Australia |
|
Adult |
11/30/06 |
Right shoulder |
Cleveland, Ohio |
|
Adult |
11/8/06 |
Left arm |
Noblesville, Indiana |
|
Adult |
11/6/06 |
Right foot |
Dallas, Texas |
|
Adult |
10/5/06 |
Both feet, legs, hips; left hand, arm and shoulders; right ring finger and pinky |
Arlington, SD |
|
Adult |
8/28/06 |
Left femur |
American Canyon, CA |
|
Child |
8/8/06 |
Ankle and leg |
Seoul, Korea Republic |
|
Adult |
Update: 8/7/06 2/11/05 |
Middle two fingers of left hand |
Providence, RI |
|
Child |
7/13/06 |
Left tibia |
Manheim, PA |
|
Adult |
7/13/06 |
Right femur-hip joint and knee |
Burlington, Ontario, Canada |
|
Adult |
6/14/06 |
Pelvis, right leg, right knee, lower back |
Nederland, Texas |
|
Adult |
Update: 6/7/06 10/29/03 |
Update: Right hand, wrist and arm Right hand and arm |
New Berlin, WI |
|
(Mike, father) |
Child |
5/30/06 |
Right foot |
Sheridan, Wyoming |
Adult |
5/19/06 |
Left tibia, foot and heel |
Milwaukee, WI |
|
(Amanda, mother) |
Child |
Update: 5/12/06 2/25/2001 |
Update: Right hand, wrist, arm and shoulder Right hand |
New: Encinitas, CA Atlanta, Georgia |
Adult |
4/22/06 |
Right femur; right knee |
Hagerstown, MD |
|
Adult |
4/16/06 |
Right pelvis and femur |
Narvik, Norway |
|
Adult |
4/9/06 |
Right wrist, index finger and thumb; shoulder |
Hereford, UK |
|
Adult |
Update: 3/26/06 6/27/04 |
Right foot |
Millsboro, DE |
|
Adult |
3/22/06 |
Left hand |
Minneapolis, MN |
|
Adult |
3/13/06 |
Left ankle, both feet, hip and arm |
Parker, CO |
|
Adult |
Update: 10/30/08 2/24/06 |
Distal fibula on right leg |
Garrison, N.D. |
|
Adult |
2/22/06 |
Shoulders, arms, wrists, hands, legs |
San Diego, CA |
|
Adult |
2/11/06 |
Right hip and femur |
Karlskrona, Sweden |
|
Adult |
Update: 6/28/10, 1/15/06; 8/10/l03 3/5/03 |
Right ankle and foot
|
Edgewater, NJ |
|
Adult |
Update: 1/11/06 4/7/2001 |
Left foot, femur and hip
|
Noble, IL |
|
Adult |
1/2/06 |
Right hand — middle finger and wrist |
Powder Springs, GA |
|
Adult |
Update: 12/11/05 11/7/05 |
Right foot and ankle
|
Lexington, NC |
|
Adult |
10/21/05 |
Middle finger of right hand |
Köln, Germany |
|
Adult |
10/11/05 |
Right Scapula, (L) 5th & 6th Ribs and (R) 3rd & 4th |
Alaska |
|
Adult |
9/16/05 |
Left hand and wrist |
Charleston, South Carolina |
|
Adult |
9/9/05 |
Left and right tibia and fibula; left foot; both hands |
Ontario, Canada |
|
Child |
8/24/05 |
Left hip and left lower extremity |
Harrison Township, Michigan |
|
Adult |
7/7/05 |
Left hip and foot |
Austin, TX |
|
Adult |
7/5/05 |
Left hand |
Memphis, TN |
|
(Terry, mother) |
Child |
6/3/05 |
Right leg |
Milltown, NJ |
Adult |
5/23/05 |
Left forearm |
Seattle, WA |
|
Adult |
5/21/05 |
Both shins |
Johannesburg, South Africa |
|
Adult |
5/14//05 |
Left femur |
Colorado Springs, CO |
|
Adult |
5/13/05 |
Right shin just below the knee |
Del Rio, TX |
|
Adult |
5/11/05 |
Right leg |
Cardale, PA |
|
Adult |
5/4/05 |
Knee and lower leg |
Sedona, AZ |
|
|
Child |
5/2/05 |
Right foot |
Philadelphia, PA |
Adult |
4/29/05 |
Legs, feet, hands, right wrist, rib, back and skull |
Toronto, Ontario Canada |
|
Adult |
4/12/05 |
Right foot, tibia and fibula |
Holland |
|
Adult |
4/8/05 |
Right tibia |
Kerrville, TX |
|
Child |
3/12/05 |
Left hand, arm, shoulder blade; a little in spine |
Aurora, MO |
|
Adult |
3/10/05 |
Rib, vertebrae, spinal canal |
Seattle, WA |
|
Adult |
2/11/05 |
Middle two fingers of left hand |
Providence, RI |
|
Adult |
2/11/05 |
Left leg and arms |
Houston, TX |
|
Adult |
1/25/05 |
Second and third toe of left foot |
Tauranga, New Zealand |
|
Adult |
1/22/05 |
Right hand and wrist |
Klamath Falls, OR |
|
Adult |
1/19/05 |
Right side from hip down |
Louisville, KY |
|
(Lisa, mother) |
Child |
Update: 1/19/05 1/17/05 |
Right foot
|
Arnold, MD |
Adult |
1/5/05 |
Right foot and ankle |
Winston Salem, NC |