Woman with Osteopetrosis Dates with the Help of Friends

 

When Brianna Terry was just two years old, her doctors gave her a diagnosis of autosomal recessive osteopetrosis. At the time, the doctors were concerned about her wellness; they even told Brianna’s parents that their daughter would not live past ten years old. Now, at 28 years old, Brianna has shattered those expectations — and is looking to continue on her life’s journey. VNExplorer shares that Brianna has been starting to get more into dating and is looking to find the love of her life. But since Brianna is also blind, she is harnessing the power of her friends to help vet her matches – and find the perfect one.

Brianna’s Story

After Brianna knocked her foot against a bed when she was younger, she began limping on it. Her parents took her to the hospital, where they found out that she had broken her foot. The doctors at the hospital also felt that Brianna’s bones looked strange to them, perhaps a bit dense. After further testing, Brianna was diagnosed with osteopetrosis.

Growing up, Brianna grappled with educational issues, as many of her teachers were unsure how to work with a blind student. Additionally, Brianna experienced frequent bone breaks – she has had over 100 in her lifetime – and osteomyelitis, a chronic bacterial bone infection. This caused her to sometimes feel isolated at school. Eventually, Brianna launched a nonprofit organization called Scarred Not Broken, where she provides support and resources for people with disabilities.

Now, Brianna is searching for love – with the help of some friends. She isn’t too keen on online dating yet, but has met a few people while out with her friends. When they go out, her friends help describe what the potential suitors look like, and help vet them for good personality traits. In the end, says Brianna, she trusts them because she knows what she likes.

In the end, Brianna hopes that she will be able to meet her perfect match. She feels that dating can be difficult, especially as she wants people to see her for who she is, not for her perceived limitations. However, she is confident that she will be able to meet her match in the future, and urges everyone in the rare disease community to just remember how worthy of love, support, and care they are.

About Osteopetrosis

According to the National Foundation for Rare Disorders (NORD), osteopetrosis, a rare bone disease, is:

marked by increased bone density due to a defect in bone reabsorption by cells called osteoclasts. This leads to accumulation of bone with defective architecture, making them brittle and susceptible to fracture.

Altogether, there are three main forms of osteopetrosis:

  • Autosomal dominant. This is the most common form and often presents with mild symptoms. Typically, symptoms manifest in late childhood to early adulthood. Common symptoms can include:
    • Osteosclerosis
    • Frequent fractures
    • Osteomyelitis, specifically of the jaw
    • Dental abscesses
    • Rhinitis
    • Enlarged spleen and liver
    • Anemia (low red blood cell count)
  • X-linked. This is an extremely rare form which predominantly affects males. In addition to dense bones and other bone-related symptoms, people with this form can show signs of:
    • Ectodermal dysplasia (abnormalities of the hair, skin, nails, and sweat glands)
    • Lymphedema
    • Immunodeficiency
  • Autosomal recessive. Also known as malignant infantile type, autosomal recessive osteopetrosis is more severe. Typically, symptoms manifest right after birth. Without treatment, this form of osteopetrosis can be fatal within the first ten years of life. Symptoms associated with autosomal recessive osteopetrosis can include:
    • Macrocephaly (an abnormally large head)
    • Retinal atrophy
    • Eyes that appear widely spaced
    • Hydrocephalus
    • Blindness
    • Hearing loss
    • Micrognathia (an abnormally small jaw)
    • Enlarged liver or spleen
    • Delayed growth and delayed psychomotor development
    • Nystagmus (involuntary eye movements)
    • Strabismus (cross-eyes)
    • Abnormal bone hardening and overly dense bones
    • Frequent bone fractures
    • Seizures
Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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