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‘What’s in a number?’
Annemarie Bevers IDF region Europe
Event title - DD Month YYYY - Location
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IDF Europe is:
•an umbrella organisation representing 66 diabetes associations in 47 countries across Europe •represent people living with diabetes and healthcare professionals. •provide essential expertise and up-to-date evidence on diabetes •support diabetes awareness campaigns •advocate European and international organisations for proper public policies for diabetes.
IMI – JDRF Diabetes Patient Focus Meeting 20 May 2014 - Brussels
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From 2013 to 2035:
IMI – JDRF Diabetes Patient Focus Meeting 20 May 2014 - Brussels
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Once there was a little girl….just like many others
IMI – JDRF Diabetes Patient Focus Meeting 20 May 2014 - Brussels
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In 1998
• I wasn’t feeling well but couldn’t put my finger on what was wrong
• My doctor picked up the signal and started research on several things
• After half a year, still not feeling well, no diagnose
• I was send to the hospital for a consult • After 8 months, still no diagnose, still feeling bad • My question then: could it be Diabetes? Although
I had none of the specific symptoms
IMI – JDRF Diabetes Patient Focus Meeting 20 May 2014 - Brussels
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And then you know: life will never be the same
IMI – JDRF Diabetes Patient Focus Meeting 20 May 2014 - Brussels
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Diagnose
Diagnose: Diabetes Mellitus Type 2 Type 2 at first stage because I was diagnosed at the age of 40 years. Genetically based on mothers side. Later: DM type 1 or another type of Diabetes? Maybe LADA (Latent Autoimmune Diabetes Mellitus in Adults)? Re-diagnosed: 10 years after the diagnose Type 2, I was tested for anti-GAD (glutamic acid decarboxylase). Result of testing: negative. Research learned that these anti-GAD could disappear shortly after the diagnose. Nowadays: still living with questions about what type of diabetes I have.
IMI – JDRF Diabetes Patient Focus Meeting 20 May 2014 - Brussels
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Carrying a backpack
From the beginning: • Lots of changes in therapy • Lots of complications (liver, inflammations,
cheiropathy, stomach, thyroid gland, allergic reactions and so on) like my mother had
• No ‘regular’ patient with ‘regular’ symptoms • Not fitting in the regular healthcare treatment • Struggling for being heard as a non-regular
patient • Struggling for customised care and patient
centred care.
IMI – JDRF Diabetes Patient Focus Meeting 20 May 2014 - Brussels
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Most important starting point
Quality of life
IMI – JDRF Diabetes Patient Focus Meeting 20 May 2014 - Brussels
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Needs
• Dialogue with all the HCPs • More dedicated research on finding the right
number of diabetes • More information about the different kinds of
diabetes and how to treat ‘personally’ • Make HCPs aware that listening is important • Help to make choices • More use of Pharma genetica • DNA profiling (more genetically risks?).
IMI – JDRF Diabetes Patient Focus Meeting 20 May 2014 - Brussels
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Tailor-made?
IMI – JDRF Diabetes Patient Focus Meeting 20 May 2014 - Brussels
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Research and development:
From ‘one size fits all’ to ‘tailor-made’
IMI – JDRF Diabetes Patient Focus Meeting 20 May 2014 - Brussels
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Always carrying a handbag full with devices, pills, dextro,…
IMI – JDRF Diabetes Patient Focus Meeting 20 May 2014 - Brussels
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Thank you Questions?
IMI – JDRF Diabetes Patient Focus Meeting 20 May 2014 - Brussels