Learn About Fibrous Dysplasia and Our FD Community

In June 2021, Cash was diagnosed with Craniofacial Fibrous Dysplasia (FD) at the age of 8 years old. FD is a rare bone disease that grows differently than non-impacted bones.

Cash has fibrous dysplasia FD in the left side of his face only. The bones affected for Cash are his sinus area, above his teeth, in his bottom jaw, his palate, orbital floor, and also in his sphenoid. The sphenoid is a butterfly shaped bone located within the skull. Optic nerves run through a hole in the sphenoid. In Cash’s case, there is a small concern his optic nerve could become constrained in the sphenoid on the left side of his face as the FD bone grows, causing the optic nerve to be squeezed and potential vision issues or blindness on the left side of his face.

Because the disease affects Cash’s palate and jaw, he requires orthodontic braces to help manage his bite as the bones continue to grow at a different rate than the non-affected side of his face. His front teeth on the left side of his face are also affected by this meshy bone and therefore are impacted.

Fibrous dysplasia can occur differently for many people. It can occur in the face and skull or in the long bones. People affected have a great variation of this disease. Some people may have pain or no pain, difficulty walking, depending on the location and degree of the disease. This disease is not hereditary, and cannot be passed on.

Cash will live a long life and would be able to perform the same functions as other children. As FD is a rare disease, our family sought multiple opinions for how to approach Cash’s diagnosis. Cash has been to Children’s Hospital of Philadelphia, Children’s Hospital of Boston, Duke Hospital, Medical City Hospital in Dallas, Texas, and CS Motts in Michigan. The locations do have varying opinions of whether or not to operate now, but the challenge with fibrous dysplasia is that if you operate on the affected bone, it can cause the FD to become more aggressive. The majority consensus for Cash is to allow him continue to grow and develop and operate only when necessary or post puberty.

Meet Logan

Logan Middlebrooks is 8 years old. He was born in Indianapolis, IN. He loves to tour the museum, he likes gaming and playing on his play station. He likes battling on Roblox and has always loved science, math, and excelling in school. He was diagnosed with Fibrous Dysplasia in April of 2021, but does not and will not let that stop him from living the amazing life he was destined to. 

Meet Weston

Weston Hill is a 10-year-old boy in Raleigh, North Carolina who has Craniofacial fibrous dysplasia. Weston was first diagnosed at the age of 4 when we noticed his vision was failing. The fibrous dysplasia had a major impact on the periorbital cranium/forehead causing optic nerve compression. In January 2018 Weston had surgery in an attempt to preserve his vision and remove the affected bone. Weston had a craniectomy of the frontal skull and left orbital roof to remove the tumor. At the same time, they did a cranioplasty to repair the skull with a peek implant and an orbital decompression of the left optic nerve. Unfortunately, Weston’s vison did not improve and as a result he is legally blind. Since 2018 much of the tumor has grown back, he is closely followed by an amazing team of doctors at Duke Childrens Hospital and the NIH. Despite this disease Weston is a super tough, energetic, fun loving little boy who’s courage and resiliency has absolutely amazed me. Weston has three big brothers and two little brothers he enjoys music and gaming with his friends.

Meet Torian

Diagnosed with MAS/FD at the age of 3. Torian enjoys fishing with his dad, playing video games with his two younger brothers, playing soccer and working towards his next belt in karate.

Meet Zoe

Zoe is 9 years old. She lives in Melbourne Australia and is currently in grade 3. She loves karate, drawing, pasta, horses, dogs, going to the beach and listening to music. She also has craniofacial fibrous dysplasia on her left orbit, frontal and temporal bones. Zoe was first diagnosed at 8 years old after a MRI scan. We thought she had a bump on her head from karate and wondered why it was taking so long for the bump to go down. A CT scan then followed and the next day our phones lit up with specialist appointments, neurosurgeons, plastic maxillary surgeons, ophthalmologists and endocrinologists at our local Children’s Hospital. We are 12 months into Zoe’s diagnosis and, while we understand she will face challenges as she grows, today she is happy and living life to the fullest. She brightens every room that she walks into. Her FD diagnosis will never stop her. It amazes me how strong and resilient she is.

Meet Gabriel

Age diagnosed – 5.5 years old 

General details about diagnosis  – Gabriel had always seemed very nasally when he spoke but the speech pathologist said he was actually pronouncing all his words correctly. The speech pathologist did notice slight facial asymmetry along the left hand side of Gabriel’s face but we didn’t think anything of the comment at the time. When we saw the ENT for what we thought would be a ‘routine’ adenoid issue, the ENT noticed a white mass behind his left eardrum. An ear CT, followed by a full head CT were ordered. We then received the diagnosis of polyostotic craniofacial fibrous dysplasia 

Approximate location – Base of skull, orbital, temporal, sinus, cheek, ear, upper and lower jaw and skull bones are affected.