1. Migraine - an overlooked neurological disorder
Elena Ruiz de la Torre
Zurich, October 10, 2017

2. What I Stand For President of European Headache Alliance
The European Headache Alliance (EHA) is a non-profit, patient umbrella group which was launched in 2006
Together with our partner organisations, EHA voices the views and concerns of headache patients across Europe
Our aim is to promote awareness and understanding of migraine and other primary headache disorders and seek improved access to appropriate diagnosis and treatment for all.

3. Migraine as shown in Media
Not what is is shown in newspapers
Real: Unable to call, move, tired, weak, see
Nausea and vomiting
Brain slower
Huge headache
Act of faith to believe how awful..

4. My journey and awful experiences
The Reality:
Not what is is shown in newspapers
Real: Unable to call, move, tired, weak, see
Nausea and vomiting
Brain slower
Huge headache
Act of faith to believe how awful..
For society it is an act of faith to understand how awful migraine can make us feel

5. The In-Between Matters
Migraine attacks are only part of the picture that leads to the direct and indirect impact – stigma, fear etc.

6. This is also me, an active, functioning professional, normal
We have an episode and hours later – we are normal
We are perfect people when we don’t have the attacks
We are concerned about the stigma of migraine, and the risk of labelling from employers and loss of work
We are perfectionists, we are active – that’s a trigger
Migrainers don’t want to confess they suffer from migraines – nothing, they are hidden

7. Diagnosis & important role of Carers
How important it is to get a good diagnosis
How little knowledge there is about Migraine
How much our life is conditioned by the Migraine
How disabling and incapable we are during a Migraine Attack
How important a Caregiver is for us at this moment

8. Migraine: Scale and Burden
Migraine is one of the top 10 causes of years lived with disability for men and women according to WHO
Migraine is a complex and disabling neurological condition that produces substantial disability in nearly all facets of life
More than 90% of sufferers are unable to work or function normally during their migraine
Around 190 million work days are lost every year in the EU due to migraine
Migraine on its own is the cause of 1.3 per cent of all years of life lost to disability
Source:
European Brain Council. Migraine Fact Sheet.
World Health Organization. Headache disorders
L.M Bloudek. Cost of healthcare for patients with migraine in five European countries: results from the International Burden of Migraine Study (IBMS). J Headache Pain Jul; 13(5): 361–378.

9. Stigma associated with Migraine
Misunderstanding, lack of respect, refusal of understand, rejection

10. Challenges with Current Treatment Options
Frequent use of medications to treat headaches when they occur can lead to medication-overuse
Up to 80% of patients discontinue migraine prevention medication within a year
Currently available treatments have generally been repurposed from other areas rather than designed with migraine as a target
 Patients are always looking forward to new treatments, always looking for something new to come to the market…we are always desperate
 Patients are desperate for new treatments that work and are safe and tolerable.

11. Patients Lost to Treatment
A key message across stakeholder platforms
From an academic article in the British Journal of General Practice
“GPs do not appreciate the impact of migraine and patients do not consult because of poor previous experience”
From blog post on Harvard Medical School website
“I think 80% of all migraineurs can be effectively helped, but only about a quarter of them are effectively helped at the present time,”
Dr. Egilius Spierings, professor of neurology at Harvard Medical School.
From a patient story on Migraine.com, an online migraine community
“I have decided that I need to take charge and to not rely on my doctors anymore (I realize I should have done this a long time ago).”
From Migraine.ie, Irish Patient Advocacy group website
“In Ireland, 12-15% of the population have migraine. Only about half of these 500,000 people are actually diagnosed and even fewer are receiving treatment for their condition.”

12. Call To Action As journalists, you can help:
Patients need information about the illness, they need to understand how to avoid attacks and the importance of not overusing medication
Patients, and the Public must understand how the illness works and its effects
Patients need to be mobilized to ask for
Their right to proper treatment
Recognition of their illness without stigma and misconceptions
Payers and policy makers need to know the economic impact of migraine on healthcare systems and on workplaces

13. THANK YOU