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My name is Dorien, and this is my story.
I am 59 year s old, and end of last year, just prior to Christmas, I learned that I have PPMS (Primary Progressive Multiple Sclerosis). The moment you are confronted with this diagnose, your whole world collapses. The news was really devastating. Off course I had heard about MS, but never expected it would overcome me. Well, it did, and it can happen to anyone
I have always been a busy bee. Next to my part-time work I was used to walk long stretches with our dogs and regularly went horse riding. I now also have 2 grandchildren that I would love to play with and take to the zoo in the coming years. Also I looked forward to babysitting the youngest grandchild, a lovely boy of 1.5 years now. And then you are diagnosed with MS which sucks all energy out of your body and spoils these plans.
The symptoms started about 2.5 years ago; walking became more difficult, my balance deteriorated and I became tried more quickly. I fell a couple of times and was not able to stand up on my own strength. At first the doctors thought the symptoms were caused by my thyroid gland (I am under medication for this), but the symptoms got worse and I was sent to a neurologist. After a year of testing and 5 MRI’s later the diagnose came: PPMS. The neurologist explained that the disease is progressive, meaning the deterioration of the body is faster than the small recovery it is able to make. The body is attacked by my own immune system. There is medication on the market, that that only slows down the decline.
Currently I have several aids at my disposal like a special chair, stairlift and a walker in case I want to walk more than just a couple of minutes.
The outlook to end up in a wheelchair not being able to all the things a grandmother should do with her young grandchildren makes me extremely sad. And then there is the terrible uncertainty of when will this happen? Tomorrow, next month? A year from now? This drives me crazy.
I started reading about the disease and medical treatments around the world. From this I learned that Stem Cell Transplantation can be used to stop the progression of the disease. Simply put this gives your immune system a ‘reset’ and the attack on your body stops. The treatment is not without risk and that is partly why it is nit yet performed in the Netherlands. A research program just started, but elsewhere the treatment has been given for a couple of years and with good results.
Doing nothing I consider no option. I spoke with people who went abroad to have the treatment and they all told me that they can do more now than before the treatment. I decided to contact ‘Clinica Ruiz’ in Mexico for treatment there. I hope the outcome of it will be that I can enjoy my grandchildren for many years to come.
As the treatment is not covered by health insurance in the Netherlands I am looking for sponsors. Through a crowdfunding actions I aim to bring the required amount together. That is why I am asking you for your support by sharing this message with as many people possible and maybe make a small donation.
If you want to follow my progress, every week I will post an update on my website: