Olle Setterberg has IPF and is chairman of the Swedish patient organization for lung fibrosis. He tries to create as much awareness about IPF as possible and urges IPF patients to focus on quality of life. 'It's important to be well informed. In the treatment of IPF, you should try to do as much as you can to maintain a good quality of life.'
After receiving the diagnosis of IPF in 2014, the now 66 year old Olle was shocked. 'I didn't know anything about IPF at that time. I was treated in the Karolinska University Hospital in Stockholm, which is one of the best centers for IPF treatment in Sweden.' Although Olle is mostly positive about the way he is treated for his IPF, he does think some improvements could be made. 'I also have multiple sclerosis (MS)', Olle says. 'So I can compare how both diseases are treated. When I was diagnosed with MS, I immediately received a lot of information about non-medical treatment, like meditation and yoga. So I immediately knew what I could do myself to manage this disease. I would like to bring that experience into the treatment of IPF.'
In the hospital of Stockholm, Olle attended educational courses about IPF, the so-called 'IPF-school'. 'I think that educational program is good', Olle says, 'but also a little too short. We discussed six topics in three days, with the education lasting two hours each day.' Olle says that patients need more time to absorb all the information about IPF: 'When you are first diagnosed, you are shocked and distraught and you miss a lot of what caregivers say to you. So caregivers need to repeat information several times, before the patient can really take it in.' Another thing Olle advocates, is a more individual approach of IPF patients. 'That's really one of my main ideas. The medical and physiotherapeutic part of the education course are given to groups of patients. But I think these should be given individually and that every patient should get an individual treatment plan.'
After the initial shock of the diagnosis had worn off, Olle started to read a lot about IPF. 'I think it’s important to be well informed about your disease. I also think it's important that you do whatever you can yourself.' Olle became one of the founding patients and chairman of the Swedish patient organization. 'It is called “Nationwide Patient Organization for Lung Fibrosis” ', Olle says. 'As a patient organization, we try to spread more information and awareness about IPF. I think it's still hard for patients to find reliable information on IPF. We also want to arrange meetings where patients can share experiences and talk to each other. When you meet other patients with the same disease, you realize you are not alone. You can comfort and support each other.'
Olle thinks a focus on quality of life and personal responsibility are important: 'After you get the diagnosis of IPF, I think everything should be focused on enjoying life as much as possible. Both the doctors and the patients should primarily focus on maintaining quality of life. As a patient, you should decide how you want to spend the years you have ahead of you. Always try to find a positive outlook, instead of losing yourself in negativity.'