Posted on May 6th, 2014
Kanya, age 42: “I wish one day people with disabilities (due to MS) everywhere in the world can have better access in daily life and can get a good job without negative discrimination.”
Access issues for Kanya
- Lack of public facilities for persons with disabilities.
- Access to get a good and affordable medication.
Martha, age 38:
One day, available MS treatments will be affordable. While struggling with MS symptoms, I also have to deal
with the financial burden of treatments that may go on for a lifetime. I have treatments to bring back function after an
attack, to prevent new attacks, and to prevent disability, since there is still no known cure for MS yet. These treatments can relieve MS symptoms and delay disease progression so I can complete my daily activities normally especially my role as housewife after my early retirement.
Access issues for Martha
- Access to affordable MS treatments.
- Employers who won’t discriminate against people with MS and still give relevant job opportunities to employees who have given contributions to the company for many years before being diagnosed with MS.
Feny, age 39:
“I like “Shrek” more than other fairy tales… in most fairy tales the prince always marries a beautiful princess and they live happily ever after… But in Shrek, un-perfect Prince and un-perfect Princess can get their own happiness. It really encourages me that one day I will find my own soul mate who will accept me just the way I am.. with all my weaknesses … in happiness and in sorrows, in health and in sickness, till death do us apart…. How romantic?
I’ve never dreamt of being a career woman, but to have my own family, my own children… To be a real mommy is my biggest dream… After being diagnosed with MS in 2009, I’m just like un-perfect princess. Sometimes I think that I’ve tried to forget my biggest dream to be married and to be a real mom. It’s not easy for me to reconcile with myself and my Lord for all the vanished dreams.
Miracles still happen today… May God hear my prayer and grant me health, and one day I wish that God will send me my own “Shrek” and we will live happily ever after…..
Access issues for Feny
- Physical ability (walk, take a bath, etc.) – I’m dependant on someone to take care of me – and its really bothers me a lot.
- Emotional relationship – sometimes I think its hard to find someone who can accept me just the way I am – with my MS.
Elizabeth, age 55:
“One day, I will show the world that having MS is not a life end, it is the beginning of my colourful journey, through which I can share love and care.”
Access issues for Elizabeth
- Public transportation and public restrooms in Indonesia are not designed to accommodate people with MS, therefore I dare not to go alone.
- Treatment is very expensive due to lack of MS Specialists in Indonesia and I have to go abroad (to Singapore) for the treatment.
- Relapsing of MS can occur any time and anywhere. It can make my legs weak and could not walk normally or excessive fatigue, and so on. Since people have limited knowledge and awareness of MS so it is often mis-interpretated as seeking attention or trying to manipulate others.