‘I look like a child’ – 25-year-old woman on reality of living with rare disability
On her TV show, the star of I Am Shauna Rae, reveals the difficulties of living with a rare disability, and how children are drawn to her because of her height.
The reality TV star has pituitary dwarfism, caused after she developed brain cancer as a six-month-old baby. The live-saving chemotherapy she underwent stunted her growth, resulting in her significantly younger-looking appearance. She stands at just 3ft 10in and weighs only 50lbs (22.7kg).
“The primary effect on my brain was the pituitary gland,” Shauna has explained previously.
“Your pituitary gland runs your hormones: your growth hormone, your sweat glands, your period, so your puberty, all that stuff. My growth hormone was the main one affected and was almost rendered dormant.”
In her social media videos and television series, Shauna has spoken about the difficulties she has experienced in day-to-day life, such as how children often believe she is the same age as them and want to play with her.
And because so little is known about the condition, she can’t even estimate her life expectancy.
In July, she also shared an update with fans, revealing that she had visited a fertility doctor and been told she is “very low in the egg count”.
She continued: “I wanted to [get] my eggs frozen, to save a chance if I want to have children. I want the same opportunities as anyone else.
“But I learned that… my insurance would not cover anything, and the medicine alone would be $9,000 (£6,800), and it was a total that came to close to $20,000 (£15,000) and I did not have the funds to go through with the procedure.”
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