New survey gives voice to people living with a rare and devastating lung disease: “When I think of IPF I think of breathlessness”
An international survey of over 500 people living with idiopathic pulmonary fibrosis (IPF) in more than 20 countries worldwide reveals the real-life emotions faced by those with the devastating disease.1 IPF affects approximately 3 million people worldwide,2,3 yet the reality of the condition remains little understood. The results are launched on Rare Disease Day 2016 to coincide with this year’s theme ‘Patient Voice’, recognising the crucial role that patients play in voicing their needs.
This Smart News Release features multimedia. View the full release here: http://www.businesswire.com/news/home/20160229005723/en/
Diagnosing IPF can be difficult, and around half of patients are initially misdiagnosed.4 The average time from first symptoms to diagnosis of IPF is between one and two years,4,5 and patients are then faced with the reality that they have an incurable disease. The emotional turmoil people with IPF experience is clearly reflected in the answers; many respondents said they felt ‘worried’ (49%), ‘afraid’ (45%), and ‘confused’ (34%) when they finally received a diagnosis.1
When asked ‘what do you think of when you think of IPF?’, the thought most frequently expressed by respondents was breathlessness (33%),1 one of the most common symptoms of IPF.6 As the condition causes the lung tissue to become thickened, stiff and scarred over time,7 the reality is that shortness of breath makes it difficult for people affected by IPF to carry out everyday tasks such as showering or getting dressed.6
The research reveals that the progressive and unpredictable nature of this fatal lung disease places an emotional burden on those affected by the condition; almost a quarter (23%) of respondents stated that they feared not being able to do the things they used to do before having IPF and one in three people said they felt “frustrated” by the condition (29%).1 The emotions felt by people affected by IPF vary following diagnosis and after receiving medical care; 31% of respondents felt that emotions become more positive and the outlook brighter at that time whilst 28% felt that emotions become more negative and the outlook less bright.1
Dr Toby Maher, Consultant Respiratory Physician at the Royal Brompton Hospital in London, United Kingdom commented: “This thought-provoking research echoes what my patients talk to me about when we discuss life with IPF. Thankfully our understanding of the treatment of IPF has moved forward a lot in the last few years. As physicians we can help address the negative emotions many patients experience at diagnosis and improve how they see their future with the disease so they feel positive about starting effective treatment.”
Early and accurate diagnosis of IPF is important, as this enables the early initiation of pharmacological treatment and other disease management options.8
Patient advocacy groups also play an extremely important role in making it easier to live with the condition; 42% of respondents said that patient groups made them feel less isolated and provide access to important information.1
Robert Davidson, President, Canadian Pulmonary Fibrosis Foundation (CPFF) said: “Living with IPF can be frightening and too few people appreciate just how isolating living with a rare disease like IPF can be. This research is an important way for those of us who are affected to be heard, so that understanding and support for the IPF patient community continues to improve.”
While a future with IPF is at times a daunting prospect, many people affected by the disease expressed a positive view of the year ahead. When asked what they or someone they know with IPF would like to spend time doing over the next year, 39% said they would enjoy time with family and one in five (21%) said they would like to travel or go on holiday.1
~ ENDS ~
Please click on the link below for ‘Notes to Editors’ and ‘References’: http://www.boehringer-ingelheim.com/news/news_releases/press_releases/2016/29_february_2016_ipf.html
This press release is issued from our Corporate Headquarters in Ingelheim, Germany and is intended to provide information about our global business.
Media + PR
Phone: +49 6132 77 182415
Fax: +49 6132 – 77 6601
Om Business Wire
(c) 2018 Business Wire, Inc., All rights reserved.
Business Wire, a Berkshire Hathaway company, is the global leader in multiplatform press release distribution.
Følg saker fra Business Wire
Registrer deg med din epostadresse under for å få de nyeste sakene fra Business Wire på epost fortløpende. Du kan melde deg av når som helst.
Siste saker fra Business Wire
OTEZLA® (Apremilast) Phase III Data Showed Significant Improvements in Patients with Active Behçet’s Disease with Oral Ulcers17.2.2018 21:00 | Pressemelding
Celgene Corporation (NASDAQ:CELG) today announced that data from the phase III RELIEF™ clinical trial of OTEZLA® (apremilast) in patients with active Behçet’s Disease with oral ulcers were presented in a late-breaking oral presentation at the 2018 American Academy of Dermatology (AAD) Annual Meeting. The results showed statistically significant reductions in oral ulcers with apremilast 30 mg twice daily (BID) versus placebo through week 12. OTEZLA (apremilast) is Celgene’s oral selective inhibitor of phosphodiesterase 4 (PDE4). Behçet’s Disease is a rare, chronic, multi-system inflammatory syndrome. Oral ulcers, the most common manifestation of Behçet’s Disease, can be disabling and have a substantial effect on quality of life. This study primarily evaluated the effect of apremilast on recurring oral ulcers in patients with active Behçet’s Disease who were previously treated with at least one topical or systemic medication. “Reducing oral ulcers, which are painful and can negatively im
CT-P13 (biosimilar infliximab) is comparable to reference infliximab and adalimumab in highly anticipated real-world study17.2.2018 08:00 | Pressemelding
Twelve-month data from the Personalised Anti-TNF therapy in Crohn’s disease Study (PANTS) was presented at the 13th Congress of the European Crohn’s and Colitis Organisation (ECCO). The results indicate that the clinical effectiveness, safety and immunogenicity of Celltrion Healthcare’s CT-P13 (biosimilar infliximab) in patients with Crohn’s disease (CD) is comparable to those treated with reference infliximab as well as those treated with adalimumab.1 The UK-wide, three-year prospective observational study investigated primary non-response (PNR), loss of response (LOR) and adverse drug reactions (ADR) to infliximab (reference infliximab and CT-P13) and adalimumab in 1610 CD patients. The data show comparable efficacy between CT-P13, reference infliximab and adalimumab in relation to PNR, LOR and ADR rates. In addition, at week 54, the remission rate was 39.7%, 39.0% and 32.7% for reference infliximab, CT-P13 and adalimumab treated patients, respectively.1 The PANTS study investigates
Avanti Communications HYLAS 4 Satellite Arrives in French Guiana16.2.2018 18:26 | Pressemelding
Avanti Communications Group plc (“Avanti”), a leading provider of satellite data communications services in Europe, the Middle East and Africa (“EMEA”), announces its HYLAS 4 satellite has arrived safely in French Guiana ahead of its March 2018 launch. This press release features multimedia. View the full release here: http://www.businesswire.com/news/home/20180216005586/en/ Avanti Communications HYLAS 4 Satellite Arrives in French Guiana (Photo: Business Wire) The spacecraft, built by Orbital ATK was packed and shipped at their Satellite Manufacturing Facility in Dulles, Virginia, United States and flown to French Guiana, where it was unloaded and will be taken to the Arianespace launch facilities in Kourou. HYLAS 4 uses the latest High Throughput Satellite technology, doubling Avanti's Ka-band capacity across EMEA. The latest addition to Avanti's HYLAS fleet will provide: Backhaul services for mobile network operators Wholesale broadband for ISPs Connectivity for governments (civil a
General Cable Corporation Stockholders Approve Acquisition By Prysmian Group16.2.2018 17:05 | Pressemelding
General Cable Corporation (NYSE: BGC) today announced the voting results from the Company’s special meeting of stockholders held this morning. Stockholders of General Cable approved the Company’s previously announced acquisition by Prysmian Group (BIT: PRY) for $30.00 per share in cash. A total of 38,140,754 shares, representing approximately 75.34% of the total number of shares of common stock outstanding and approximately 99% of the total votes cast, were voted in favor of the merger. Subject to regulatory approvals and other customary closing conditions, the transaction is expected to close by the third quarter of 2018. About General Cable General Cable (NYSE:BGC), with headquarters in Highland Heights, Kentucky, is a global leader in the development, design, manufacture, marketing and distribution of aluminum, copper and fiber optic wire and cable products for the energy, communications, automotive, industrial, construction and specialty segments. General Cable is one of the larges
Systemic Sclerosis World Congress:Inspirational Patient Stories Reveal the Challenging Realities of Living with Devastating Rare Disease16.2.2018 09:03 | Pressemelding
Boehringer Ingelheim today unveils a new phase of 'More Than Scleroderma: The Inside Story', and launches the new patient website www.morethanscleroderma.com. This press release features multimedia. View the full release here: http://www.businesswire.com/news/home/20180216005188/en/ Anna, 36, living with scleroderma (Photo: Business Wire) The global initiative highlights the importance of understanding the ‘inside story’ of each individual living with scleroderma, also known as systemic sclerosis. To coincide with the Systemic Sclerosis World Congress in Bordeaux, 15-17 February 2018, new and truly inspiring patient stories are revealed, reflecting the real-life, diverse and very moving journeys of people living with scleroderma across the world. The campaign will also be launched in the U.S. The new website www.morethanscleroderma.com features a powerful collection of photographs and video stories of people living with scleroderma across the world, revealing the life-changing impact o
Philip Morris International Recognized as a Global Top Employer for the Second Year in a Row16.2.2018 08:00 | Pressemelding
Philip Morris International Inc. (PMI) (NYSE/Euronext Paris: PM) today is recognized for the second year in a row as a Global Top Employer. This year’s certification from the Top Employer Institute is awarded to PMI teams in 44 countries, a testament to the company’s consistency and excellence in offering an enriching and dynamic work environment, and exceptional development opportunities for employees across the globe. PMI has been recognized by the Top Employer Institute for six consecutive years. This year, PMI was awarded with five regional certifications in Europe, the Middle East, Africa and, for the first time, in North America and Latin America. Additionally, Indonesia was the first PMI affiliate to be certified in Asia. “It is a proud moment for all of us at PMI,” said Charles Bendotti, PMI Senior Vice President, People and Culture. “Our success as a company relies on the men and women who come to work every day with a passion to achieve, and a willingness to learn, grow, and