Name : Susan Ingram
E-mail: rw2101@cox.net
Adult: 45 years old
Location: San Diego, CA
Areas affected: Both shoulders, arms, wrists, hands and fingers; both legs
Personal History:
I have been under the care of an orthopedic surgeon since 1990, when the
melorheostosis was first diagnosed. I have had two surgeries to my left wrist
to remove massive bone growth.
UPDATE:
Adult: 51 years old
Email: aloha.susan@yahoo.com
I WAS DIAGNOSED WITH MELORHEOSTOSIS WHEN I WAS IN MY MID-TWENTIES. NOW 20+
YEARS AND TWO SURGERIES LATER,
IT HAS PROGRESSED MORE AGGRESSIVELY. MY WRIST IS ABNORMAL, DEFORMED, AND I AM
IN CONSTANT PAIN. EACH TIME MY ORTHOPEDIC SURGEON SHAVES OFF THE ABNORMAL BONE
GROWTH, MORE BONE GROWS. THE PAIN IS DISABLING AND SHOOTS ALL THE WAY UP MY
LEFT ARM. I HAVE LOST ALL MY STRENGTH IN MY LEFT HAND, I HAVE LIMITED MOBILITY
AND USE. I AM CURRENTLY AWAITING YET ANOTHER SURGERY TO MY LEFT WRIST FOR MORE
BONE REMOVAL. I HOPE AND PRAY FOR A CURE SO NO ONE ELSE HAS TO SUFFER THIS
KIND OF CRIPPLING PAIN, AND I AM THANKFUL FOR THIS WEB SITE WHERE WE CAN SHARE
OUR STORIES. IT HELPS TO KNOW YOU ARE NOT ALONE. GOD BLESS.