JANESVILLE - Jessica Congdon, 40, is hoping to raise awareness of craniometaphyseal dysplasia as she awaits potential surgeries which may save her eyesight.
"I want to help spread the awareness of what it is (craniometaphyseal dysplasia), and what it is like to live with it," she said.
She, and several family members, have suffered serious health consequences from it including Congdon becoming deaf. Most recently, she's in danger of becoming deaf and blind.
Congdon, who grew up in Beloit and now lives in Janesville, was born with a rare genetic bone dysplasia, called craniometaphyseal dysplasia, which causes the skull bones to overgrow. It can also cause abnormalities in the region of the long bones known as metaphysis. The abnormal bone growth continues throughout life. Bone overgrowth in the head causes many of the signs and symptoms of craniometaphyseal dysplasia, according to the U.S. National Library of Medicine website at https://ghr.nlm.nih.gov.
Congdon's grandmother, well-known sign language instructor Lesetta Thompson, has the genetic disorder as well as Congdon's mom, brother and sister. Lesetta Thompson is deaf and Congdon's mother, brother and sister are hard of hearing. Her sister went blind at the age 4 from her optic nerves being damaged from bone growth.
When Congdon was younger her condition caused her to need hearing aids as the skull grew over the middle instruments in the ear. At age 4, she had tear duct surgery as the bones grew over that area.
Over the years Congdon had to struggle with looking a little different than other children because of her condition. However, she said God blessed her with having the right man come into her life.
"Michael Congdon loved me for who I was, it didn't matter that when we had children that I could pass it on to them," Congdon said.
One year after her marriage she started having balance problems and then started losing her hearing. She first became deaf in her right ear. Then about two years after that she became deaf in the other ear.
"Our daughter was 10 months old. My heart was crushed I would not get to hear her talk," Congdon said.
Congdon went on to learn sign language and read lips and have a full life. Her daughter, Hailey, is now 14-years-old and the family enjoys being outdoors. Although Congdon had to quit work because of her medical issues nine years ago, she loves crafts, scrapbooking, playing cards, and being with family.
However in August of 2008 Congdon started having more complications. She underwent decompression of the skull bone due to pressure on her spinal cord. In July 2016, she had decompression of her left optic nerve, to help save her eyesight.
"MRIs showed that the skull bones are close to my optic nerves. If they continue to grow over them I will lose my eyesight," she said.
In December 2018 Congdon started to experience pain and vision problems, and MRIs showed bone growth in the area where she had surgery.
She is also having trouble with her balance due to the skull bone growing over and crushing the balance nerves as well in the middle ear up to her eardrum.
Congdon is currently waiting to find out what the next step is. She may need to have risky surgeries to remove bone from crushing her optic nerve.
To help with her expenses she started Go Fund Me campaign at https://www.gofundme.com/TeamJessicaC-save-eye-sight.
She is also working on awareness ribbons for craniometaphyseal dysplasia.
"One thing that is very tricky with the doctors is they have never seen anything like this," Congdon said. "They don't know what's going to happen in the future."