5th Edition – Paris -- June 4-5, 2015

Nuria Zúñiga

@tulupus

5th Edition – Paris -- June 4-5, 2015

• I am a person like any other: dreams, goals,

achievements, …

• I also have lupus

• I know how it is like to live with a chronic illness

• My lupus has made change my life: dreams, goals,

achievements, …

• I listen to other patients

5th Edition – Paris -- June 4-5, 2015

Other patients

Lupus got complicated…

5th Edition – Paris -- June 4-5, 2015

I am only a patient that has put a voice to

what it feels like to live with a chronic illness.

By listening to people this web has become

what it is today and I have become a POL

(pledge out loud) person.

Now I write about…

• Treatments

• Psychology

• Family

5th Edition – Paris -- June 4-5, 2015

• "Patient Opinion Leaders (POL), are individuals who are well versed in a

disease either as sufferers or caretakers of individuals with chronic

disorders and share their knowledge on the particular disease with

others" and that in most cases happen to share this knowledge in social

media: Twitter, Facebook, blogs...”

How deep is my knowledge in lupus?

Is that the question???

5th Edition – Paris -- June 4-5, 2015

The right questions are:

• Do I know how it feels like to live with a chronic illness?

• Do I know what patients need?

• Can I help pharma help patients, doctors and relatives?

• Am I responsible when I talk about health?

5th Edition – Paris -- June 4-5, 2015

Yes…Do you have

lupus?

Many illnesses are

treated with drugs that

are not specifically

indicated for that

condition

5th Edition – Paris -- June 4-5, 2015

I collaborate with several Pharma companies in projects

not directly related to lupus.

Pharma

Health Specialists

Patients

5th Edition – Paris -- June 4-5, 2015

Other patient common needs:

• Psychology.

• Social awareness.

• Treatment adherence.

• Healthy life habits.

• Patient education.

5th Edition – Paris -- June 4-5, 2015

5th Edition – Paris -- June 4-5, 2015

Nuria Zúñiga

@tulupus

http://tulupusesmilupus.com