Advice of Morquio Syndrome

Distractions (helps distract me from pain)

by Jinene

Almost a year of infusion treatments

by Renee

growing up with siblings with the same desaese

by A.van Weijen

We are not alone with this desease.

by Cees Daniëls

#1 FAMILY SUPPORT

by Zuleyka

My family and friends always support me. I'm glad to have them

by Maria

Learned about disease

by Veronika

God

by Jinene

Having a supportive geneticist

by Renee

Having the right docters to turn to

by A.van Weijen

Help eachother, support groups on Facebook -click on: view more

by Cees Daniëls

#2 TRYING TO UNDERSTAND WHAT IM GOING THROUGH

by Zuleyka

My Mum (Michaela Weigl) is the Austrian MPS-President and she really does a great job.

by Maria

Talking to other parents/patients

by Veronika

Always having my families protection

by Renee

Being self supporting

by A.van Weijen

There is a patient organization for Dutch-speaking patients. Become a member ! ! http://www.med-sed.nl

by Cees Daniëls

#3 LOVING MYSELF

by Zuleyka

I get Vimizim since 2011 and it changed my life.

by Maria

Stick to diet

by Veronika