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Living with IPF and my MAC Clinical Research Experience

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Living with IPF

Christine, a retired nurse from South Yorkshire, recently took part in a clinical trial at MAC Clinical Research.

She was diagnosed with Idiopathic Pulmonary Fibrosis (IPF) in 2013. IPF is a condition wherein someone’s lungs become scarred and being able to breathe becomes increasingly difficult. Someone living with IPF will typically experience a shortness of breath as well as a persistent dry cough, these symptoms generally start gradually and worsen over time.

It is estimated that more than 30,000 people are living with IPF in the UK and there are 8000 new cases every year.

Christine shared her experience of living with IPF, saying: “I manage the condition, but I know as the condition progresses, it will manage me instead. I try and stay positive.

“I still try and carry on with my everyday life as much as I’ve always done. My husband and I like to go out walking a lot but now we’re a bit more selective about where we go because if it’s steep hills, I can’t do it. But my condition doesn’t deter us from getting out and about.”

Something that Christine struggles with when it comes to her condition is the persistent coughing; Because the IPF cough can be intermittent and persistent, it can have a big impact on someone’s quality of life.

She said: “The cough does get me down. And it’s a bit of a vicious cycle – it’s like if I go upstairs and go up too quickly, it sets the cough off. Then the cough might loosen any secretions I’ve got on my chest and until I’ve gotten rid of those secretions, the cough won’t stop. On top of this, it makes me out of breath.”

Having lived with the condition for almost a decade now, Christine is devoted to sharing information about IPF and raising awareness. Regularly sharing IPF-related posts to her Facebook, she said: “Not a lot of people know much about the condition, some people have never even heard of it. But because I’m a retired nurse, I do know about it. When I had my diagnosis, I was hoping it would not be pulmonary fibrosis and I was devastated. When you have a cough with IPF, it debilitates you.”

With the big impact that IPF has on Christine’s life, she was keen to try potential new treatments for her condition. As a retired nurse, she knew the only way to progress medicine is through clinical trials. She said: “I’ve always said to the consultants and to the respiratory nurse specialists, if ever there was a trial for a drug and if I met the eligibility criteria, I would be up for it because this is the only way medicine moves forward.”

Treatment is essential for people living with IPF. According to Asthma and Lung UK, Without treatment, half of those living with IPF will sadly pass away within three years of diagnosis.

Although this was Christine’s first clinical trial, she was not nervous. When asked about how she felt before taking part, she said: “I felt positive. It’s not just for myself, its’s for people in the future. My son is 48 and he has just been diagnosed with IPF.”

During the clinical trial at MAC, Christine felt at ease due to the staff’s welcoming approach. She said: “I can honestly tell you that the staff here have been absolutely wonderful. Really lovely. They make you feel welcome, and I feel comfortable when I’m here. And that means a lot to me. If the staff make you feel welcome, it goes a long way. I can’t fault them at all.”

MAC Clinical Research is still looking for volunteers to participate in this clinical trial for IPF. If you are at least 40 years of age and have a persistent cough caused by IPF, MAC Clinical Research would like to hear from you.

The study is running at our clinics in Greater Manchester, West Yorkshire, South Yorkshire, and Merseyside. To find out more and register your interest, you can visit our website .

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