A woman with a rare terminal illness where her brain forgets to breathe must rely on a machine in order to survive.
Thirty-year-old Cienna Ditri only received her diagnosis six years ago, despite suffering with symptoms her entire life.
She is affected by Rapid-onset Obesity with Hypothalamic Dysfunction, Hypoventilation & Autonomic Dysregulation – also known as ROHHAD Syndrome.
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Cienna is one of the oldest people to live with the illness.
The condition is extremely rare and is life-threatening, impacting the endocrine system, autonomic nervous system and breathing.
Thankfully, Cienna now has a diaphragmatic pacemaker and BiPAP AVAPS, both of which help her breathe.
“I’m very lucky I made it as long as I did before being diagnosed,” she told Need To Know.
“Before my diaphragmatic pacemaker, I woke up blind every morning with a lot of memory loss, kind of like the movie 50 First Dates from lack of oxygen.
“That doesn’t happen anymore.
“My life couldn’t be more different or better since having my diaphragm pacemaker implanted.
“It only stimulates my diaphragm muscles, moving them to create a breath.
“There are a lot of other muscles used to take a good breath though, so recently I’ve been working on telling my other breathing muscles to move timed with my pacemaker breaths to take better breaths.”
Growing up, Cienna would cry throughout the nights and sometimes turned purple.
She said: “The older I got the more ‘sick’ I got every year, until the point where it majorly disrupted my life.
“I couldn’t attend school or work, and I was on palliative care.
“When I was really little I would cry almost constantly all night and turn purple, that’s the first time my mother noticed anything.
“My doctor did a lot of testing to figure out what was really going on and after all of that said that from a pulmonary view, my brain officially didn’t tell me to breathe.”
Although her machines help keep her alive, Cienna, who is from Michigan, struggles with everyday activities that others take for granted: such as showering.
She has to remind herself to breathe the entire time.
The model is also passionate about surfing but taking part in her hobby isn’t easy.
Her machine isn’t waterproof and so whenever she is in any kind of water, she is unable to use it.
She said: “When I shower I listen to music and breathe when I know the musicians are breathing.
“When I surf, I have different routines that I follow for the different parts of surfing.
“I have to think about breathing the entire time, otherwise I don’t.”
The model is working on her breathing with a neurologist, physical therapist and speech therapist.
Cienna feels extremely lucky to have an incredible support system of friends and family around her.
She also has two service dogs, Piper and Pamina, who mean the world to her, and has recently started a virtual book club called Chronically Bookish.
During a recent trip to the Netherlands, she also made friends with a younger girl who has the same condition.
She saif: “She is 20 years younger than me but has the same condition.
“Watching her grow up and knowing her family has been one of the most impactful and helpful things in my entire life.
“We can relate to each other, have similar symptoms, give each other advice, know how the other feels – it’s priceless.
“I have the most supportive friends and family, and my service dogs have saved my life more times than I can count.
“I wouldn’t be alive without them either.”
Cienna feels positive about her future and plans to continue surfing and modelling to represent people with disabilities.
She also hopes to see the paralympic surfing community being included in the LA 2028 Paralympic Games.
Cienna added: “Personally, I don’t believe my happiness is dependent on my health.
“I am not suffering from my conditions or trying to overcome them. I am living with them.
“Every scar, device, stretch mark, and part of me tells the story of how my body and I work together to enjoy the happiness our world holds every day.
“I can’t change what happens to me but I can change how I react to it.”
