| 
   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 2011 – 2020  | 
 
| 
   Personal Histories 2011 - 2020 To read Personal Histories from 2001 - 2004, click here  | 
 
| 
   © Copyright 2001—2025 Melorheostosis Association. All rights reserved.  | 
 
| 
   Name  | 
  
   Date Submitted  | 
  
   Child/ Adult  | 
  
   Area of Body Affected  | 
  
   Location  | 
 
| 
   2/7/20  | 
  
   Adult  | 
  
   Second metatarsal in right foot  | 
  
   Talihina, OK, USA  | 
 |
| 
   2/2/20  | 
  
   Child  | 
  
   Left thumb, fingers, wrist, arm, elbow and shoulder  | 
  
   Northern Ky/Cincinnati, OH area  | 
 |
| 
   Updated 10-10-19  | 
  
   Child  | 
  
   Left Metatarsal and Tibia  | 
  
   Havertown, PA  | 
 |
| 
   5-9-19  | 
  
   Adult  | 
  
   Right Index Finger, Right Thumb, Right forearm, humerus and shoulder  | 
  
   Appleton, WI  | 
 |
| 
   4-24-19  | 
  
   Adult  | 
  
   Shin of right leg  | 
  
   Guwahati, Assam, India  | 
 |
| 
   1-23-19  | 
  
   Adult  | 
  
   Left tibia  | 
  
   Brunswick, Maine  | 
 |
| 
   12-5-18  | 
  
   Adult  | 
  
   Left hand and elbow  | 
  
   Omagh, Co. Tyrone, N. Ireland  | 
 |
| 
   11-11-18  | 
  
   Adult  | 
  
   Feet  | 
  
   Bennington, VT  | 
 |
| 
   10-28-17  | 
  
   Adult  | 
  
   Left Tibia  | 
  
   New York, NY  | 
 |
| 
   7-12-17  | 
  
   Adult  | 
  
   Right leg  | 
  
   Ireland  | 
 |
| 
   6-29-17  | 
  
   Adult  | 
  
   Right tibia  | 
  
   Mayfield, KY  | 
 |
| 
   5-14-17  | 
  
   Adult  | 
  
   Toes on right foot  | 
  
   Billings, MT  | 
 |
| 
   3-1-17  | 
  
   Adult  | 
  
   Hands and fingers  | 
  
   Waiehu, Maui, Hawaii  | 
 |
| 
   12-26-16  | 
  
   Adult  | 
  
   Left leg, hip, knee, ankle  | 
  
   London, England  | 
 |
| 
   7-25-16  | 
  
   Child  | 
  
   Left femur, right tibia  | 
  
   Kingsville, TX  | 
 |
| 
   3-23-16  | 
  
   Adult  | 
  
   Right hand  | 
  
   Burlington, Ontario, Canada  | 
 |
| 
   Originally posted 8-5-14  | 
  
   Adult  | 
  
   Right tibia, big toe and ankle  | 
  
   Gladstone, Oregon  | 
 |
| 
   2-24-16  | 
  
   Child  | 
  
   Left foot  | 
  
   Essex, England  | 
 |
| 
   1-7-16  | 
  
   Adult  | 
  
   Left hand, wrist, shoulder blade and under left arm  | 
  
   St. Charles, Missouri  | 
 |
| 
   12-22-15  | 
  
   Adult  | 
  
   Right tibia on lower leg  | 
  
   Nashville, TN  | 
 |
| 
   12-9-15  | 
  
   Adult  | 
  
   Right foot  | 
  
   Auckland, New Zealand  | 
 |
| 
   11-1-15  | 
  
   Adult  | 
  
   Both condyles of left femur and tibia  | 
  
   Helsinki, Finland  | 
 |
| 
   10-1-15  | 
  
   Adult  | 
  
   Left Hand; 5th & 3rd Metacarpal Right Hand; 5th & 3rd Metacarpal  | 
  
   Phoenix, AZ  | 
 |
| 
   9-14-15 Update: 12-29-15  | 
  
   Teenager  | 
  
   5 & 7 right rib and vertebra  | 
  
   Salem,Oregon  | 
 |
| 
   6-8-15  | 
  
   Adult  | 
  
   Both femurs; third metatarsal bone of III toe of left foot  | 
  
   Sovramonte (Province of Belluno, Italy)  | 
 |
| 
   5-27-15  | 
  
   Adult  | 
  
   4th Metatarsal  | 
  
   Rochdale, Manchester UK  | 
 |
| 
   5/20/15  | 
  
   Adult  | 
  
   Right leg  | 
  
   Moses Lake WA  | 
 |
| 
   1/4/15  | 
  
   Adult  | 
  
   Right ankle  | 
  
   Fort McMurray Alberta Canada  | 
 |
| 
   10/2/14 Update to 8/28/09  | 
  
   Adult  | 
  
   Left foot, middle toe  | 
  
   Friendswood, TX  | 
 |
| 
   8/21/14 Update to 9/17/11  | 
  
   Adult  | 
  
   Right hand, fifth metacarpal  | 
  
   Phoenix, AZ  | 
 |
| 
   6/19/14  | 
  
   Adult  | 
  
   Hands, forearms, legs  | 
  
   Arlington, TX  | 
 |
| 
   6/7/14  | 
  
   Adult  | 
  
   Right side of body  | 
  
   Indianapolis, IN  | 
 |
| 
   4/11/14  | 
  
   Adult  | 
  
   Right forearm  | 
  
   Maryland, USA  | 
 |
| 
   4/7/14  | 
  
   Adult  | 
  
   Left ankle and leg  | 
  
   Livingston, TX  | 
 |
| 
   4/2/14  | 
  
   Adult  | 
  
   Left knee and shin bone. Left foot and three toes. Right side of face and skull base.  | 
  
   Benton, AK  | 
 |
| 
   3/23/14  | 
  
   Adult  | 
  
   Right hip down to my right foot  | 
  
   Franklin, PA  | 
 |
| 
   3/1/14  | 
  
   Adult  | 
  
   Left heel bone  | 
  
   Derby, UK  | 
 |
| 
   1/23/14  | 
  
   Adult  | 
  
   Left foot  | 
  
   Jackson, MS  | 
 |
| 
   12/30/13  | 
  
   Adult  | 
  
   Third finger, left hand and small finger (see x-ray from May 2013)  | 
  
   Merthyr Tydfil, South Wales, UK  | 
 |
| 
   11/10/13  | 
  
   Adult  | 
  
   Left hand: 3rd Metacarpal and 4 carpal bones: Lunate, Hamate, Capitate, and Triquetrum  | 
  
   West of Phoenix, AZ  | 
 |
| 
   11/10/13  | 
  
   Adult  | 
  
   Right leg and foot  | 
  
   Western Massachusetts  | 
 |
| 
   11/7/13  | 
  
   Adult  | 
  
   Right hand  | 
  
   La Harpe, Illinois  | 
 |
| 
   10/31/13  | 
  
   Adult  | 
  
   Left index finger  | 
  
   Barrie, ON Canada  | 
 |
| 
  
   Parents: Alejandro and Angela Aluisa Michuy 
  | 
  
   10/25/13  | 
  
   Child  | 
  
   Arm and right hand, left leg and foot  | 
  
   Guaranda-Ecuador  | 
 
| 
   10/24/13  | 
  
   Adult  | 
  
   Right thumb and pinky finger  | 
  
   Portland, OR  | 
 |
| 
   8/27/13  | 
  
   Adult  | 
  
   Left Arm (both bones from elbow to wrist)  | 
  
   Franklin, TN  | 
 |
| 
   7/31/13  | 
  
   Adult  | 
  
   Right knee  | 
  
   Puerto Rico  | 
 |
| 
   6/27/13  | 
  
   Adult  | 
  
   Left 8th rib  | 
  
   Clarksville, TN  | 
 |
| 
   6/13/13  | 
  
   Adult  | 
  
   Left fibula  | 
  
   Dragasani-Valcea, Romania  | 
 |
| 
   4/13/13  | 
  
   Adult  | 
  
   Right ankle  | 
  
   Albany, GA  | 
 |
| 
   4/3/13  | 
  
   Adult  | 
  
   Left ulna, left wrist, left fingers  | 
  
   Fullerton, CA  | 
 |
| 
  
   (Carolyn, mother)  | 
  
   3-16-13  | 
  
   Child  | 
  
   Right foot and leg  | 
  
   Dartmouth NS, Canada  | 
 
| 
   11-27-12  | 
  
   Adult  | 
  
   Left fibula  | 
  
   Terrace, British Columbia, Canada  | 
 |
| 
   9/24/12  | 
  
   Adult  | 
  
   Right leg, foot and shoulder  | 
  
   Cary, North Carolina  | 
 |
| 
   8/16/12  | 
  
   Adult  | 
  
   Left hand  | 
  
   Shanghai, PR CHINA  | 
 |
| 
   7/15/12  | 
  
   Adult  | 
  
   Left foot and ankle  | 
  
   Cambridge, England  | 
 |
| 
   7/14/12  | 
  
   Adult  | 
  
   Right foot  | 
  
   Anchorage, Alaska  | 
 |
| 
  
   (by parents: Ballard and Tanda)  | 
  
   4/27/12  | 
  
   Child  | 
  
   Left leg and hip  | 
  
   Battle Creek, Iowa  | 
 
| 
   4/8/12  | 
  
   Adult  | 
  
   Hand  | 
  
   Holland  | 
 |
| 
   3/27/12  | 
  
   Adult  | 
  
   Hands, right side of body  | 
  
   Australia  | 
 |
| 
   3/21/12  | 
  
   Adult  | 
  
   Left ankle  | 
  
   Melbourne Victoria Australia  | 
 |
| 
   3/7/12  | 
  
   Adult  | 
  
   Left and right arms and hands  | 
  
   Minnesota  | 
 |
| 
   2/23/12  | 
  
   Adult  | 
  
   Right clavicle  | 
  
   Sioux Falls, SD  | 
 |
| 
   2/18/2012  | 
  
   Adult  | 
  
   Left foot and lower leg  | 
  
   Maryland  | 
 |
| 
   1/24/12  | 
  
   Adult  | 
  
   Tibia and femur of left leg  | 
  
   Port St Lucie, FL  | 
 |
| 
  
   (Ronan and Niamh, parents  | 
  
   1/22/12  | 
  
   Child  | 
  
   Right foot  | 
  
   Dublin, Ireland  | 
 
| 
   1/15/12  | 
  
   Adult  | 
  
   Left ring finger /hand  | 
  
   Crystal Lake, IL  | 
 |
| 
   1/7/12  | 
  
   Adult  | 
  
   Right Foot  | 
  
   St Louis, MO  | 
 |
| 
   12/8/11  | 
  
   Adult  | 
  
   Left wrist, hand, fingers  | 
  
   San Diego, CA  | 
 |
| 
   12/2/11  | 
  
   Adult  | 
  
   Right finger and pinkie finger on left hand  | 
  
   Ashburn, VA  | 
 |
| 
   11/01/11  | 
  
   Adult  | 
  
   Right Upper leg, hip to knee  | 
  
   Rochester, NY  | 
 |
| 
   11/10/11  | 
  
   Adult  | 
  
   Right hand, right ulna, right shoulder  | 
  
   Lewiston, Maine  | 
 |
| 
   11/3/11  | 
  
   Adult  | 
  
   Right leg, knees; possibly hands  | 
  
   Las Vegas, NV  | 
 |
| 
   10/22/11  | 
  
   Adult  | 
  
   Right ankle, top of foot to second and third toe  | 
  
   Corpus Christi, TX  | 
 |
| 
   10/20/11  | 
  
   Adult  | 
  
   Right humerus, radius, ulna, wrist, index finger and thumb  | 
  
   Hot Springs , AR  | 
 |
| 
   10/10/11  | 
  
   Adult  | 
  
   Left leg  | 
  
   Davie, FL  | 
 |
| 
   10/5/11  | 
  
   Adult  | 
  
   Right fingers, hand, arm  | 
  
   Manning, SC  | 
 |
| 
   9/17/11  | 
  
   Adult  | 
  
   Left arm and leg  | 
  
   Finland  | 
 |
| 
   8/23/11  | 
  
   Adult  | 
  
   First and second rib on right side; First joint on index finger of right hand  | 
  
   Gainesville, FL  | 
 |
| 
   8/15/11  | 
  
   Adult  | 
  
   Right foot  | 
  
   Sumter, SC  | 
 |
| 
   7/3/11  | 
  
   Adult  | 
  
   Right leg  | 
  
   Pune, Maharashtra, India  | 
 |
| 
   5/17/11  | 
  
   Adult  | 
  
   Left forearm  | 
  
   Raleigh, NC  | 
 |
| 
   5/12/11  | 
  
   Adult  | 
  
   Left leg  | 
  
   Argentina  | 
 |
| 
   4/27/11  | 
  
   Adult  | 
  
   Right hand (5th metacarpal)  | 
  
   Chandler, AZ  | 
 |
| 
   4/21/11  | 
  
   Adult  | 
  
   Right side outer wrist including pinky and ring fingers  | 
  
   New Bedford, MA  | 
 |
| 
   4/5/11  | 
  
   Adult  | 
  
   Right hand and wrist  | 
  
   Edinburgh, Scotland  | 
 |
| 
   3/1/11  | 
  
   Adult  | 
  
   Femur  | 
  
   Marysville, OH  | 
 |
| 
   1/22/11  | 
  
   Adult  | 
  
   Right tibia  | 
  
   Bothell, WA  |