Marianella Salapatas, EFA Vice President

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European Federation of Allergy and Airways
Diseases Patients Associations
What Does ChronicObstructivePulmonaryDisease M
ean for the Patient?

• Marianella Salapatas, EFA Vice President

www.efanet.org
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European Federation of Allergy and Airways
Diseases Patients Associations
20 countries 32 member organisations in which
over 500.000 patients carers


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MISSION

• Reducing the frequency and severity of allergies,
  asthma and COPD
• Minimize their societal implications
• Improve health-related quality of life of
  patients
• Ensure full citizenship of people with these
  diseases
• and pursue equal health opportunities in the
  field of allergy and airways in Europe.

Central Values Patient perspective Involvement
- Sharing knowledge and experience - Partnership
and cooperation - Visibility and presence
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• THIS IS COPD
• from patients
• with their own words

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"Breathing problems have plagued me for many
years, but it was only recently, when I was
hospitalised for an exacerbation, that I was
diagnosed with COPD and given treatment. I feel
very frustrated, but I want to improve my
condition."

Giovanni, 56, Italy
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I was diagnosed with COPD 2006, after having
pneumonia. The doctors tell me it is the smoking,
even when I quit 17 years ago. I have had to
quit my job, sports and I am on 80 disability
pension. My neighbour used to always greet me,
but now hides inside when I am on oxygen. I
continue to be active in voluntary work as a
coach in bicycle racing school, but without bike
now. 

COPD Patient, 58, France
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"I try to live as normally as possible and have
oxygen with me wherever I go. I can do the
groceries, but can no longer take care of my
youngest grandchild as I do not have the strength
to take her in my arms anymore."
Gunilla, 64, Sweden
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Jonas, 61, Lithuania
"The coughing I have found very hard to handle as
it happens at the most inappropriate times - when
I'm teaching, meeting new people, during dinner
with my colleagues and students." At times it can
be very bad, and also breathing can be difficult.
At night I find some times it is worse as I
think the body relaxes more and I wake up with a
coughing fit. I am just very surprised that
more is Not known about COPD and support is not
the same as for asthma. But it is something I
have had to come to terms with and cope as best I
can."

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COPD is a very trying condition. I have always
been a lively, active person. Now the disease
rules my life and I regret not being able to have
a serene and pleasant old-age with my husband and
my family.

Anna Maria, 67, Italy
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For many years I suffered with repeated
respiratory infections treated with more and
stronger medications each time, which was
ineffective. Finally I was diagnosed with COPD.
Without precise explanation, without correct
diagnosis, one prescription more and do the best
you can during the exacerbation. Why help isnt
provided in these cases? Why does the society
leave the patients to be lost in the
hopelessness? Thank you for an article in a
magazine, which has directed me to COPD
association.

COPD Patient, France
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RESEARCH TELLS US

• Up to almost three out of four patients with COPD
  report difficulty in the simplest of everyday
  activities, being out of breath after simply
  walking upstairs
• Depression, anxiety, and hopelessness are common
• Caregivers at home must bear a considerable
  burden and large part of the physical, social,
  and emotional role responsibilities of the
  household

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• Prevention
• Smoking cessation
• Early diagnosis
• Healthcare
• Social support
• Technical support

• Rehabilitation
• Reimbursement
• Information
• Education
• Adherence/concordance

• in my care
• in society
• in policy
• making

patient

• Indoor air
• Outdoor air

• Prevention
• Healthcare
• Treatment

• Quality of life
• Finding the cure

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EFA SOFIA DECLARATION 2 JUNE 2007

• ALL patients with allergy, asthma COPD
• Comprehensive European and national programmes on
• Access to good, equal standards of care, no
  matter where you live in Europe
• High standards of and access to patient
  professional education, information and new
  knowledge
• Healthy, unpolluted air to breathe indoors and
  out

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The WRITTEN DECLARATION ON COPD

• Calls on the EU and the Member States
• To promote prevention and ensure equal access to
  early diagnosis, correct treatments and mobility
  of COPD patients
• To facilitate long-term research into the causes,
  prevalence and treatments for COPD
• To implement comprehensive smoke free policies
  and to develop smoking cessation strategies
• To publish a Green Paper on indoor air quality
• Please make a positive contribution and sign the
  Declaration

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COPD
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Thank you.Marianella SalapatasEFA Vice
Presidentwww.efanet.org