- Osteopetrosis
- Interviews
karmavet's interview
How did all start?
Diagnosed in early twenties with ADOll due to bone pain in neck and back.
Do you already have a diagnosis? How long did it take you to get it?
Yes. After x-rays and bone scans diagnosis was given pretty quickly due to classic skeletal anomalies consistent with osteopetrosis: rugger jersey spine- vertebrae end plates with sclerotic banding, Iliac crest sclerosis/hips, some sclerotic banding on ribs.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Difficult to find any orthopedic or endocrinologist specialist familiar with osteopetrosis. Symptomatic treatment for herniated discs, bulging discs, advanced degenerative osteoarthritis in lumbar region along with the osteopetrosis there. Some physical therapy along with pain management -opioids and now medicinal marijuana.
What has been the most useful thing for you so far?
Pain management
What have been your biggest difficulties?
Finding any new research or Medical professionals familiar with osteopetrosis
How has your social and family environment reacted? Have your social or family relationships changed?
N/A
What things have you stopped doing?
Any physically demanding activity that might aggravate back and hip pain such as yard work, lifting heavy objects,
What do you think about the future?
Scared
