In early 2021 I was diagnosed by accident with Fibrous Dysplasia. Over my 42 years I have struggled with various health challenges, such as headaches, hearing loss, central nervous system issues, breast lumps, fatty liver, skin issues, uterus/ovary issues, gastrointestinal issues and each time I have dealt with each one individually.
An extended period of headaches with unusual facial sensations, body shakes and bone growths in my gums & skull that couldn't be ignored caused me to go to the doctors. The doctor recommended antibiotics, knowing something was not right, I pushed for a referral to have a CT of the brain. I was convinced that there was something sinister going on that antibiotics couldn't fix.
What followed the CT Scan was months of stress and fear to confirm a diagnosis that no one actually knew what to do with. My doctor word for word said " In my 50 years of practicing, I have never had a patient with Fibrous Dysplasia/McCune Albright Syndrome", then he promptly sent me off to a neurosurgeon.
As I sat in the neurosurgeons office I could feel my anxiety rising as I saw him bring up google to find out more. Gee, I thought, I can tell him more than google can. He is a fantastic neurosurgeon but this was new to him. He wrote out various referrals - Full body bone scan with contrast, CT scan with contrast & the big one full body MRI with contrast. It took me 3 months to get through all the tests, a couple of failed attempts to do the MRI and finally I went back to the neurosurgeon with the idea that the diagnosis would come with a solution.
How wrong was I. The plan - wait and come back in 6 months to do all the tests again and see if the lesions had progressed. That plan did not sit well with me. I woke up one morning, turned on my computer and posted for the first time in a support group I had joined on Facebook. I was having a particularly bad day, flare ups from the FD, challenges from the MAS and I simply asked, does anyone else think that FD/MAS is worse with hormone, weather or stress changes. Thankfully my now friend responded and recommended an endocrinologist that they were seeing.
Dr Kathryn Benson was a god send, she had experience with FD/MAS clients, she sent me off for a number of blood & urine tests, she took control and is my primary specialist looking after me and referring me to others as needed. FD/MAS is incurable, the treatments are for management purposes only. Having the right specialist looking after me has made all the difference to my life, all I want is for everyone else to have a clear pathway from diagnosis to care. Living our best lives! So I started Fibrous Dysplasia/McCune Albright Syndrome Australia Ltd. to raise awareness, improve support & care pathways for people living with FD/MAS.