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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 2005—2010  | 
 
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   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—2025Melorheostosis 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  |