Story By: William McGee, Sub-Editor: Joseph Golder, Agency: Newsflash
A young woman with a rare disease that means she has not eaten in two years, is also allergic to water and suffered cancer, has notched up half a million social media followers as she talks about her health battle.
Fernanda Martinez, 22, from the southern Brazilian city of Florianopolis, started her fight with ill health when she was disgnosed with Ehlers-Danlos syndrome, an inherited disorder that causes joint hyper-mobility that meant as a young girl she thought she had super powers.
Her extreme flexibility led her to take part in an Olympic gymnastics class as a possible competitor, but her Olympic aspirations were cut short after she developed other symptoms that profoundly impacted her quality of life.
Martinez now documents her ups and downs on Instagram and TikTok, where she boasts 119k and 410k followers respectively.
She was diagnosed with the condition which affects just one in 5,000 when she was 17. However, she had long suffered pains in her arms and legs and she was born deaf in one ear.
The condition also caused her diarrhoea, vomiting and stomach pains. For this reason, she has not eaten or even had a sip of water for the last two years.
She told local media: “I started to feel really sick when I ate. A lot of nausea. A lot of pain. The pain was horrible. My belly became very swollen.”
Martinez is fed through a catheter straight into her vein. “I’m fed for over 12 hours every day. We do it at night, while I’m sleeping.”
She has also been allergic to water since she was 15, making it painful to bathe, go out in the rain, or even sweat.
On top of all Martinez’s symptoms, she also had papillary thyroid cancer, which runs in her family. The cancer, which her parents also had, was unrelated to her other condition.
She has a home care system installed at the house she shares with her mother and grandmother, where she is seen daily by two nurses.
Martinez documents her struggles on social media, where she updates her over half a million followers on what it is like to live with her illnesses.
The young woman, who aspires to be a doctor one day, maintains a positive and stoic outlook on life, despite the challenges she faces.
One of her posts reads: “We’re all dying – some faster than others – and we will never know when our time is up. It’s not a tragedy, it’s the natural course of life.
“So, take each day at a time. Give your best TODAY, evolve TODAY, enjoy TODAY, make a difference to someone’s life TODAY.”
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