A WOMAN with a rare lung disease has said she loses sleep because of anxiety over her future.

Emma Garwood from Hollingdean was diagnosed with pulmonary hypertension two years ago after she suffered a blood clot in her lung caused by the high blood pressure condition.

Now on blood thinners, the 27-year-old worries she may need major surgery if her condition worsens.

“The thought keeps me up at night sometimes,” Emma said.

“This is a super-scary prospect to me. I think a lot of the struggle comes with not knowing if or when I would need this surgery.

“I visited a hospital in Cambridge where they do the procedure and it was quite scary.

“I just have to take it as it comes.”

Emma’s rare condition means she often becomes breathless.

But it is the emotional impact that affects her the most.

“The main stress is the anxiety,” the pharmacy assistant said.

“When they found the blood clot in my lungs I had no answer as to why it happened.

“I can never know when another one could happen.

“With a lot of other conditions there are ways to avoid it getting worse.

“With with pulmonary hypertension you never have that certainty.

“You just get on with things as usual, though it does make me nervous.”

Because her condition is so rare, Emma said a lot of people misunderstand her disease.

“If you say to someone you have cancer, they’ll immediately know what’s wrong,” she said.

“But when you say you have pulmonary hypertension, they don’t really get it.

“A lot of the time I get breathless when I’m walking and people automatically assume I’m unfit.

“They never realise I have this condition.”

Breathlessness is something Emma struggles with daily.

“Before I was diagnosed I could barely walk up the stairs,” she said.

“It was frustrating as I knew something serious was wrong with me.

“I try and walk as much as I can now but Brighton’s hardly a flat city.

“But you just have to get on with things as usual.”

This week marks Pulmonary Hypertension Awareness Week.

Pulmonary Hypertension Association chairman Iain Armstrong called the disease an “extremely serious condition”.

“You often can’t tell someone has PH just by looking at them. Encouraging understanding of this devastating condition is vital,” he said.