ALS and Neuromuscular Diseases in Latvia

Viktorija Ķēniņa M.D., Ph.D

Neuroimmunologist at P. Stradins Clinical University Hospital

Amyotrophic Lateral Sclerosis

ALS occurs throughout the world with no racial, ethnic or socioeconomic boundaries

Familial causes comprise only about 5% of ALS cases

Improvements in medical management,

including nutrition and breathing,

regularly improve the chances of

patient survival

Some patients (up to 10 percent)

will survive more than ten yearsCenter for ALS Research and Therapy

Progressive motor neuron disorder with weakness, atrophy, spasticity, respiratory failure, problems with swallowing, speech and behaviour (incidence is roughly 2 people per 100,000 per year )

M.Sabatelli. ALSJounal. 2011

Most people who develop ALS are

between the ages of 40 and 70

PROBLEMS SOLUTION

We dont know our group…..

Possibility to participate in ALS and other trials,

to talk about this problem with the World

Most common

form

Age of onset

Genes

Life expectancy

LATVIAN/BALTIC/NORDICNeuromuscular Disease Register

Time from onset of symptoms to diagnosis

Education (doctors, patients, assistants, relatives…..)

Multi-disciplinary teams

PROBLEMS SOLUTION

CENTRE for Neuromuscular

Diseases

Delay in diagnosis 9 – 11+ months from onset of

symptoms

Absence of educational information

Failures to discuss issues with all related

groups

Multi-disciplinary teams are the cornerstone - nearly

all symptoms can be managed, if we know HOW!!!!!!!

PROBLEM SOLUTION

CENTRE for Neuromuscular

Diseases

Patients’ organisationMOTUS VITA Education

Professional organisations Register

Support

PROBLEM SOLUTION

PROBLEM SOLUTION

PROBLEM SOLUTION

Medication (150 Euro)

Respiratory Management (300 Euro)

Nutrition Management (300 Euro)

Palliative Care (?????) Government Programsand

NGOs, who cansupport us

Structural change of the health care system LATVIAN/BALTIC/NORDIC

Neuromuscular Register

CENTRE of Neuromuscular Diseases

Support from other organisations, clinics,

centres

SUMMARY

Participation in educational programmes for doctors,

patients, carers…

THANK YOU FOR YOUR ATTENTION!

WE CANNOT DO

THIS ALONEWE NEED YOUR

SUPPORT