Banner: About IPF

Frequently Asked Questions

  

I am living with IPF

Can I exercise?1

Exercise may help to minimise the effects of IPF and have a positive effect on your sense of well-being. Of course, your ability to exercise depends on a variety of factors, including how advanced the disease is, as well as your age and general health. You should talk to your doctor before embarking on any exercise regime, as they can help to evaluate your condition and determine an appropriate level of activity.

What can I do to help myself?1

Listen to your doctor. Avoid risk of infection. Eat well. Remain as active as possible. Vaccinate against flus and other sicknesses, including pneumonia. Stay positive and enjoy life. Learn and practice relaxation techniques. Don’t be embarrassed to ask for support from friends and family. You can also join a support group and help others with IPF. You may gain strength in knowing that you are helping future patients and researchers by advocating for the pulmonary fibrosis community.

Can I travel?2

Yes, but it is always wise to check with your doctor first. Be cautious at high altitudes because the low oxygen levels in the air may cause increased breathlessness. If you are placed on the lung transplant list, you must be in close proximity to the hospital at all times.

I care for someone with IPF

How can I help someone close to me that has been diagnosed with IPF?

Just provide the support and help they need, please do not consider it an imposition because they really do need you.

The diagnosis of my loved one’s IPF is overwhelming me and I don’t know how to cope. What can I do?

It is important you remain strong for your partner, as they need you. There are patient associations and community support groups where you will be able to discuss your feelings with other people in similar situations.

Caring for my loved one is making me feel physically drained. What can I do?

Are there any family members or friends you can turn to for support? Even if this means just a few hours off every now and again. Your doctor may also be able to help with sorting out some assistance for you.

I have just been diagnosed with IPF

What are the treatment options for IPF?3

Whilst there is no cure for IPF, various therapies may help to alleviate symptoms and slow down disease progression. Therapeutic strategies include various medications, as well as non-pharmacological options such as pulmonary rehabilitation, oxygen therapy and lung transplantation. For more information on these treatments take a look at the treatment section of this website.

What is the outlook for someone with IPF?4

IPF is a progressive disease, meaning that it becomes worse over time and it cannot be cured.

My doctor told me about a clinical trial that I could be eligible for. What is a clinical trial?

A clinical trial is a medical study designed to scientifically determine the effectiveness and safety of a new treatment. Long before a new treatment comes to the stage where it can be used in patients it has been through years of development to ensure it is safe for use in humans and that it works as expected.

Who will be involved in my care?

You may see a lot of different doctors and other healthcare professionals over the course of your diagnosis and care, including your family doctor, pulmonologists (doctors who are specialists in treating lung diseases), nurses, social workers, dieticians and others.

I think I might have IPF

Am I at risk for developing idiopathic pulmonary fibrosis (IPF)?5,6

Certain factors, such as cigarette smoking, some viral infections, genetics, GERD (gastro-oesophageal reflux disease) and prolonged exposure to occupational or environmental contaminants or dusts may increase the risk of IPF, but only a small fraction of people exposed to such factors will eventually develop IPF.

What causes IPF?5

Idiopathic means of no known cause and in most cases of lung fibrosis (scarring), an exact cause is never established.

What are the symptoms of IPF?5

The signs and symptoms of IPF include:

  • Shortness of breath - only during exercise at first.
  • Dry, hacking cough that doesn't get better.
  • Rapid, shallow breathing.
  • Gradual, unintended weight loss.
  • Tiredness and generally feeling unwell.
  • Aching muscles and joints.
  • Clubbing (widening and rounding) of the tips of the fingers or toes.
  • "Velcro-like" crackles heard by the physician during lung auscultation.

How common is IPF?

IPF is a rare disease. IPF affects 14 - 43 people per 100,000, with a total of approximately 3 million patients worldwide.4,5

How is IPF diagnosed?7

IPF can sometimes be difficult to diagnose. Your medical history, a physical examination and various tests will be used to make a diagnosis. For more information, see our page: How is IPF diagnosed?

I want to find out more

How can I find out more about IPF research and clinical trials?

You can find out more about IPF research and clinical trials into IPF by talking to your doctor or visiting www.clinicaltrialsregister.eu Additionally, the Pulmonary Fibrosis Foundation website has information about clinical trials.

How can I find local support groups?

The various doctors and other healthcare professionals you meet may be able to direct you to support groups in your area.

References

  1. Cottin V, et al. Diagnosis and management of idiopathic pulmonary fibrosis: French practical guidelines. Eur Respir Rev Off J Eur Respir Soc2014;23:193–214.
  2. Luks AM. Do lung disease patients need supplemental oxygen at high altitude? High Alt Med Biol 2009;10:321–327.
  3. Wells AU, et al. Interstitial lung disease guideline. Thorax 2008;63:v1–v58.
  4. Raghu G, et al. Incidence and prevalence of idiopathic pulmonary fibrosis.Am J Respir Crit Care Med 2006;174:810–816.
  5. Meltzer EB, et al. Idiopathic pulmonary fibrosis. Orphanet J Rare Dis2008;3:8.
  6. Fernandez IE, et al. New cellular and molecular mechanisms of lung injury and fibrosis in idiopathic pulmonary fibrosis. Lancet 2012;380:680–688.
  7. Raghu G, et al. An official ATS/ERS/JRS/ALAT statement: idiopathic pulmonary fibrosis: evidence-based guidelines for diagnosis and management. Am J Respir Crit Care Med 2011;183:788–824.

This site uses cookies to improve your browsing experience. By using this site, you agree to their use. Cookie Information

No, give me more info OK, i agree