13 July 2018

Rare condition leaves young woman sleeping for 19 hours per day

She now hopes to bring light to her disease by documenting her journey on Instagram.

This young teacher has been dubbed “sleeping beauty”.

In 2013 Kristen Devanna, from New York, US, was diagnosed with Hashimoto’s syndrome – a condition in which the immune system attacks the thyroid –after experiencing cracked skin and a constant need for sleep.

“There’s very little awareness regarding Hashimoto’s [syndrome], even doctors who I encountered knew very little about it,” said Kristen.

“When the world around you can’t understand your struggles or how to help you, it becomes a very daunting and lonely place.

“Having an autoimmune disease is frustrating because the world around you sees you differently on the outside than how you feel on the inside. People just assume I’m tired and they can’t wrap their head around it.

“I had to stop visualising myself as a ‘normal’ 27-year-old and I needed to realise that my body has limitations.”

Although Kristen noticed changes in her appearances, she only became concerned after she started sleeping more than usual.

“There were many subtle changes throughout my body, but the symptom that affected me the most was that I was sleeping a lot more,” said Kristen.

“My skin became flaky and easily irritated, my extremities would [be] freezing cold even in warm weather, to the point where they were completely numb.

“I’d wake up in the morning and have to go back to sleep an hour into the day and struggled to stay awake.

“There were many days where this disease had complete control over me and my body ached. I’d feel sick after just going to the shop or taking a shower, and I cried making the bed.”

After learning to cope with her diagnosis and managing her symptoms for the past few years, the literacy teacher is now building her strength and increasing her energy level by pushing herself to workout.

“I love having control over how I can take care of it and build my strength,” Kristen added.

“I limit myself to between two and four workouts a week, either at home or in the gym. I enjoy running, HIIT workouts and lifting weights.

“I’m proud to say I’m much stronger than I look. Endorphins are key and help me get a boost of energy,” she said.

Despite seeing many doctors and specialists, Kristen hasn’t had any treatment to help with her condition.

She now hopes to bring light to her disease by documenting her journey on Instagram.

“My goal is to show others that not everything is as it seems and not all disabilities are visible. You should never judge someone’s capabilities based on their appearance,” said Kristen.

“If I can continue to build awareness and help other people with chronic illness feel less alone, then my diagnosis is more than just a disease but the gift to spread hope and educate others.

“Life has its ups and downs and although it’s easy to view any disease as negative, you’ve been dealt these cards for a reason – it’s because you can handle it and you’re meant to impact the world with so much more.”

Sources: Magazine Features