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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. |
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© Copyright 2001—2020 Melorheostosis Association. All rights reserved. |
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Personal Histories 2001—2004 |
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Personal Histories 2001 – 2004 To read Personal Histories from 2005 - 2010, click here |
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© Copyright 2001—2025 Melorheostosis Association. All rights reserved. |
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Name |
Child/Adult |
Date Submitted |
Area of Body Affected |
Location |
|
Adult |
12/16/04 |
Left arm |
Roanoke, VA |
|
|
Adult |
12/5/04 |
Left forearm and upper arm |
Lafayette, LA |
|
|
(Mary, mother) |
Child |
11/27/04 |
Left leg, foot, hip; right knee |
Princewick, WV |
|
(Phyllis, mother) |
Child |
11/24/04 |
Left foot and leg |
Fort Polk, LA |
|
(Angela, mother) |
Child |
10/13/04 |
Right foot, leg and pelvis; mandible |
Tulsa, Oklahoma |
|
Adult |
9/25/04 |
Left hip to left knee |
Somerset, Colorado |
|
|
(Marcellene, mother) |
Child |
9/24/04 |
Hips, right leg and foot |
Dallas, Texas |
|
Adult |
7/30/04 |
Left wrist, arm and elbow; some evidence in shoulder |
|
|
|
Adult |
7/15/04 |
Left foot and ankle |
Falls Church, Virginia |
|
|
Adult |
6/20/04 |
Left leg |
Baird, Texas |
|
|
Adult |
6/12/04 |
Both legs |
Flemington, West Virginia |
|
|
Adult |
4/28/04 |
Right femur and right knee New information added 6/29/04 |
Philippines |
|
|
Adult |
4/25/04 |
Left foot, ankle, leg and hip |
Loganville, GA |
|
|
(Donna, mother) |
Child |
3/22/04 |
Left foot and left lower leg New information added 4/5/04 |
Milan, TN |
|
Adult |
3/5/04 |
Right hand, arm, shoulder and collar bone |
Lake Worth, FL |
|
|
Adult |
3/5/04 |
Middle finger of right hand |
UK, Stourbridge, West Midlands |
|
|
Adult |
3/1/04 |
Right hip, femur and knee |
Franklin, PA |
|
|
Adult |
1/16/04 |
Left leg from hip to knee |
Hoffman Estates, IL |
|
|
Adult |
1/13/04 |
Left foot (ankle) |
Perlis, Malaysia |
|
|
Adult |
1/10/04 |
Right hand and middle finger |
Reading, England |
|
|
(Melvalina,mother) |
Child |
1/1/04 |
Right foot, leg, hip and spine (photos included) |
Bedford, KY |
|
Adult |
12/13/03 |
Middle finger, left hand |
Pocos de Caldas, MG, Brazil |
|
|
Adult |
12/5/03 |
Left hand and arm |
Montreal, Quebec |
|
|
Adult |
12/1/03 UPDATE 8/27/10 |
Right leg/foot; left foot; rt. hip; lower back |
St. Paul, MN |
|
|
Adult |
11/29/03 |
Middle finger, left hand |
Nottingham, England |
|
|
Adult |
10/12/03 |
Right foot and ankle |
Cincinnati, OH |
|
|
Adult |
10/6/03 |
Left foot |
United Kingdom |
|
|
Adult |
9/1/03 |
Left and right tibias and femurs, left ulna, right humerus |
Meriden, CT |
|
|
Adult |
8/14/03 |
Middle finger, left hand |
Cincinnati, OH |
|
|
Adult |
7/20/03 |
Left foot and ankle, going up left leg |
Baltimore, MD |
|
|
Adult |
4/14/03 |
Right hand, wrist, forearm, elbow; joints on right side of body |
Bountiful, Utah |
|
|
Adult |
3/7/03 |
Right foot |
Fareham, Hampshire, England |
|
|
(Jill, mother) |
Child |
2/24/03 |
Left arm and hand |
Portland, Oregon |
|
Adult |
2/6/03 |
Left tibia, fibula |
Madison Heights, VA |
|
|
Adult |
1/29/03 |
Left leg and foot |
Stevens Point, WI |
|
|
Adult |
1/22/03 |
Foot, femur, hand |
Hamden, Connecticut |
|
|
Adult |
1/20/03 |
Right hip to foot |
Westport, CT |
|
|
(Terry, mother) |
Adult |
11/1/02 |
Foot |
Brownsville, TN |
|
(Becky, mother) |
Child |
9/12/02 |
Hand, wrist, forearm and shoulder |
Fort Madison, Iowa |
|
Adult |
9/3/02 |
Left knee |
Reading, Berkshire, UK |
|
|
Adult |
8/30/02 |
Right leg |
Santa Rosa, Argentina |
|
|
Adult |
8/20/02 |
Left knee |
San Diego, CA |
|
|
Adult |
8/14/02 |
Right leg |
Dundee, Scotland |
|
|
Adult |
8/8/02 |
Left tibia, left foot and heel |
Milwaukee, WI |
|
|
Adult |
7/8/02 |
Foot and ankle |
Brooklyn, New York |
|
|
Adult |
6/29/02 |
Right femur and patella |
Holyoke, Massachusetts |
|
|
Adult |
6/8/2002 |
Left foot |
Lewisburg, Tennessee |
|
|
Adult |
6/7/2002 |
Right forearm |
Hot Springs, Arkansas |
|
|
Adult |
5/20/2002 |
Whole body except skull and face bones |
Shelton, Washington |
|
|
Adult |
5/9/2002 |
Right index finger |
Gloucestershire, England |
|
|
Adult |
4/28/2002 |
Both feet, left leg and hip |
Granite City, Illinois |
|
|
Adult |
4/16/2002 |
Left knee; shinbone downward (Personal history in Portuguese, with English translation) |
Stockholm, Sweden |
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|
Adult |
4/14/2002 |
Left leg (tibia) |
Seattle, Washington |
|
|
Child |
3/10/2002 |
Left arm from shoulder to fingers |
Hereford, England |
|
|
Adult |
3/7/2002 |
Left shoulder, arm, wrist and hand |
Perth, Western Australia |
|
|
Adult |
2/24/2002 |
Right leg (femur) |
Ottawa, Canada |
|
|
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 |
|
|
Child |
1/26/2002 |
Right leg (tibia) |
Little Elm, Texas |
|
|
(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 |
|
Adult |
1/8/2002 |
Left knee, ankle, foot; right hip New information added 3/25/02 |
Bismarck, No. Dakota |
|
|
Adult |
12/4/2001 |
Left index finger |
Albertville, Minnesota |
|
|
Adult |
11/9/2001 |
Left arm, hand and shoulder (esp. wrist and thumb-joint) |
Braunschweig, Germany |
|
|
Adult |
10/15/2001 |
Both lower legs, arms, base of skull |
Lansford, Pennsylvania |
|
|
Adult |
8/28/2001 |
Both shoulders |
Boston, Massachusetts |
|
|
Adult |
8/27/2001 |
Both feet, legs, left hip New information added 8/7/02 |
Seattle, Washington |
|
|
Adult |
7/18/2001 |
Left foot and leg New information added 2/28/05 |
Burbank, Washington |
|
|
Adult |
6/22/2001 |
Right foot |
Chattanooga, Tennessee |
|
|
Adult |
6/15/2001 |
Right hip |
Riviera Beach, Florida |
|
|
Adult |
6/7/2001 |
Right hip, entire right leg and foot |
Florence, Kentucky |
|
|
Adult |
6/5/2001 |
Bone between wrist and elbow, left hand |
St. Louis, Missouri |
|
|
(Lyn, mother) |
Child |
2/18/2001 |
Bilateral, Upper Extremities Photos Added 4/6/2001; Update Regarding Surgery Added 10/2001 |
St. Louis, Missouri |
|
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 |
|
Adult |
3/27/2001 |
Left knee and foot |
Dallas, Texas |
|
|
Adult |
3/26/2001 |
Right leg (femur and tibia) |
Melbourne, Australia |
|
|
Adult |
3/24/2001 |
Right arm and wrist |
Berwyn, Illinois |
|
|
Adult |
3/19/2001 |
Left foot |
West Virginia |
|
|
(Debbie, mother) |
Child |
2/26/2001 |
Left hand/wrist; hot spots in both arms and legs |
Dothan, Alabama |
|
Adult |
2/26/2001 |
Left foot |
Delight, Arkansas |
|
|
Adult |
2/23/2001 |
Left arm and shoulder (melorheostosis and osteopoikilosis) |
Lansing, Michigan |
|
|
Adult |
2/21/2001 |
Both Legs, Right Upper Arm |
Watsonville, California |
|
|
Adult |
2/21/2001 |
Right hand and wrist |
Columbus, Ohio |
|
|
Adult |
2/21/2001 |
Right leg from the knee down |
Laurel, DE |
|
|
Adult |
2/21/2001 |
Right hand, bilateral arms and shoulders |
New York, NY |
|
|
(Carla, mother) |
Child |
2/20/2001 |
Right side, upper and lower |
Winston, GA |
|
(Lydia, mother) |
Child |
2/18/2001 |
Left Leg (upper and lower) |
Madison, WI |