My father lost the hard way; I will win this.
I was and am a happy positive young woman of 37 years old, who is full of life. Married the best man in the world, Freek, and together with our beautiful son Berk and our two dogs Bokkie and Baie we have a very nice life in Elten, a small village in Germany, right on the border with the Netherlands.
On Thursday, July 7th, 2016 my familiar life changed, when I faced complete failure of my complete left body side. Two days later in a neurological clinic, I was diagnosed with MS (RRMS). The disease that completely destroyed my father and caused him to pass away at the young age of 64, after a long years of illness and deterioration.
How should I tell my dear mother?
WTF: this can not and must not happen! I have a son…. a husband... .. I do not want to end up in a wheelchair or worse. I want to live, dance, run, hike, ski, enjoy! But how? How can I continue life?
MS is a disease with many faces, it can be mild and slow progressing ... unfortunately I do not have the mildest form. Six months after diagnosis, my left side is still not OK. The left half of my face and and my left hand and feet are numb all the time. After walking 30 minutes, I just want to sit down quickly. My energy level is horrendously low and cognitively I am not what I used to be.
What to do? WHAT TO DO? My neurologist does not have the solution but does offer medication, Plegridy, that could help ... the European Medicines Agency describes it as follows: How Plegridy exactly works in MS is not yet known, but the active ingredient in the drug, peginterferon beta 1 -a, appears to calm down the immune system (the natural defenses of the body) and prevent the relapses of MS. Plegridy is given as an injection under the skin of the abdomen, arm or thigh.
Really not that encouraging .... But I'm going to use this drug. I can not risk doing nothing and getting a violent attack soon. No one can tell how I will recover from such an attack, and what functions can I lose because of it.
The dust settled down a bit after my diagnosis, allowing one certainty to emerge: I do not want to live without hope, knowing that it goes downhill from here. I am so young!
Internet: all information in one click, search, find, which is a blessing.
Nutrition? Cannabis oil? I am on it.
Many documentaries also feature food, pharmaceuticals, agriculture, livestock, etc.
I can only conclude that we actually do live in a sick world. A world evolving around money, and money is exactly what I need ....
I found the "answer", s solution, a shot at grtting better. It is an extremely tough process, but one demonstrating good results. HSCT, or 'stem cell therapy'. (Chemotherapy 'breaks down' my immune system, and rebuilt with my own healthy stem cells, that are extracted from my bone marrow. For more information see HSCT).
After profound research and with the help of my close friends who have challenged me, I have signed up for this treatment on the 10th of November in Mexico. There I can get this treatment in September 2017.
Mexico.. eh.. I hear you ask? .... Yes Mexico.
In the Netherlands and Germany, this treatment will be given for diseases but not for MS. Our own Minister for Health Care will, at the earliest in 2024 endorse this treatment for MS. This will likely be too late for me! The disease and its progression will not wait for that to happen.
Specifically, my options are to go to Russia, India, Israel and Mexico. Based on my desk research and the many convincing good experiences of predecessors (globally over 1500 MS patients recieved HSCT in various locations), I chose Clinica Ruiz in Mexico.
It is an intense process, but it also gives me a chance to fight back! The downside is that the German and Dutch neurologists and especially the health insurance companies do not recognize HSCT treatment, since stem cell therapy is not (yet) an official treatment for MS. This means that we must fund the entire process of preparation, treatment and after-care ourselves. The HSCT treatment - and the expenses made in aftercare - costs € 80,000.
PLEASE DONATE AND HELP ME!