The story of sarah
When I was 17 I found out I had an (A B C) Aneurysmal Bone Cyst in my right humerus, A.B.Cyst causes your bone to deform while growing. The bone cells fill up with blood instead of hardening causing the bone to have more marrow/blood than bone. It can cause the growth plates to grow unevenly or even fracture.
I had it removed and had regular checkups to make sure everything was healing fine.
I found out 6 months ago that I had been misdiagnosed.
I actually have something called Fibrous Dysplasia. Which is a rare genetic disorder that can effect one or multiple bones throughout the skeleton.
At the moment I am aware of Fibrous Dysplasia in my Right humorous and possibly my scapula (Shoulder blade).
I am waiting to start bisphosphonate treartmeant within the next couple of months.
6 days every 6 weeks, I will be getting a course of intravenous pamidronate. Until my bony activity starts to decrease this will be my life.
I am currently in extreme pain throughout my body. Chronic headaches.
Any guidance or support you can offer would be greatly appreciated.