Lincoln woman shares journey living with debilitating rare disease

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“Either take steroids and live, or don’t take them and don’t live”. That’s what doctors told Tate Nova Scanlon when she was diagnosed with an extremely rare condition.

Tate Nova Scanlon, a 27-year-old graduate in Medical Bio Science, suffers from adrenal insufficiency, a disease which, untreated, can result in severe abdominal pains, vomiting, muscle weakness, fatigue and depression.

She contacted The Lincolnite around Rare Diseases Day with a mission to raise awareness of unknown and commonly misunderstood conditions.

“I started getting symptoms from September 2015”, she explained. “I started getting very tired. I was being unable to carry out daily work.

“I have got close to 20 health problems. Doctors kept blaming it on those, but then I met one doctor who was happy to help me.”

Tate said she would wake up between 2am and 3am and would get extremely tired during the day.

She eventually took to social media to describe how waking up at midnight was driving her crazy.

“That was when a friend of mine commented on my status asking if I have considered the possibility of having adrenal insufficiency.”

Tate is thankful to her friends who help her take part in events.

Adrenal insufficiency occurs when the adrenal glands do not produce enough steroid hormones.

Tate said it can make her feel weak and nauseous: “Sometimes I get as shaky as a leaf, not only I start feeling sick and nauseous but I actually do get sick. My stomach and legs start hurting.

“It feels like I have been run over by a truck. I feel like a deadweight”, said Tate, who was also using an asthma pump while speaking.

Around one to five people per million suffer from adrenal insufficiency.

Tate wants to help people identify their rare diseases so that they don’t have to suffer alone. She said she feels raising more awareness will help people get better and fast medical help, not only in times of crisis but also for the availability of the prescribed injections.

“I don’t know anyone else who suffers from this disease in Lincolnshire. But if anyone does, I would be more than happy to talk to them about it.

Tate posing with four doctors of the popular series ‘Doctor Who’.

“I watched Doctor Who and played cosplay to keep myself distracted from the surgeries. More than that, I met some amazing people while attending cosplays and comic cons. They understand and help me. It may sound stupid, but Doctor Who really helped me a lot.

“I am not pessimistic about this. I am realistic. I am still getting used to it, but I am having fun while I can”, added Tate with a big smile.