“Hello, my name is Danny and I have a rare bone disease called Fibrous Dysplasia (FD). FD is a disorder where normal bone and marrow is replaced with fibrous tissue, resulting in formation of bone that is weak and prone to expansion as a result. Most complications result in fracture, deformities, functional impairment, and pain. FD can effect one bone (Monostotic), multiple bones (Polyostotic), or all bones (Panostotic). I was diagnosed at the age of 8 with Monostotic fibrous dysplasia. Mine is located in the Occipital Bone and Clivus. After having a Nuclear Bone Scan, the doctors determined I have polyostotic fibrous dysplasia. Now, I have it throughout my entire skull, face, discs in my neck, hips, and pelvis area. I have had 8 different head surgeries. First one was at the age of 14 and the last one was at the age of 50.
On Facebook there is a group for FD. It’s a community of people who have FD or a loved one with FD. It was in this group I saw a post from Juliet Thomas for an event called “Project Change”. Her son, Cash, was diagnosed with Craniofacial Fibrous Dysplasia. Cash came up with name of the non profit organization Project Change. This organization is about bringing awareness to Fibrous Dysplasia but is also about bringing awareness to how individuals treat other with disabilities. He chose “Change” because of how FD can cause “changes” in ones appearance. I was fortunate enough to be able to attend the first annual Project Change event. During this event I apologized to Juliet because I couldn’t eat my meal due to my dentures not fitting properly. My dentures were too big and they would cause me to choke on my food. I lost my teeth at the age of 30 from the FD. Juliet took it upon herself to reach out to her dear friend, Robbie, and shared my story with her. Robbie’s husband is a Prosthodontist, owner of Piedmont Dental in Troutman Robbie shared my struggles with Dr. Carnaggio. He said, “I want to try and help her”. He is one of the nicest people I have ever met. When he asked me what my goals were, I immediately responded with, “I want to be able to eat in public without being stared at and I want to be able to enjoy foods I haven’t been able to eat for the last 20 years.” Lastly, I stated, “It would help my self-esteem.” Dr. C said he believed he could help me with all 3 of my goals.
If it wasn’t for Project Change and Piedmont Dental none of this would even be possible. If you are looking for a nonprofit to support, please consider Project Change as they are making a big difference in individuals’ lives as they create a standard of acceptance, love and hope for all, regardless of circumstance, disease, or any other uncontrolled influence. Also if you are looking for a new dentist, I highly recommend Piedmont Dental in Troutman. Dr. Carnaggio and his staff are amazing and will welcome you with warm smiles. Their staff is friendly, dedicated and energic. Their team is committed to working with you and your family to create a positive experience every time you visit their practice.
I just can’t thank everyone enough. I am truly looking forward to having teeth again after 20 years. Thank you Dr. C for taking the time to understand my needs and making my dreams become a reality.”
Sincerely, Danny Marley