Stamceltherapie Nicole Stienen-Groenen
Donation protected
Lovely people,
I am Nicole, 46 years old and I have been diagnosed with MS since I was 36. I am married with 2 children, a daughter of 13 and a son of 12. So both children were quite young at the time of diagnosis and they were dealing with a mother with a chronic illness.
Fortunately, there is a special therapy where they perform a stem cell transplant. Stem cell therapy unfortunately offers no chance of a cure, but it does ensure that the deterioration is inhibited or even stopped.
For the stay and the therapy the costs vary from EUR. 60,000.= to EUR. 100,000,= which is roughly equivalent to the cost of 1 year of heavy MS medication that I have been taking for 10 years. As has been regularly written in the media, stem cell therapy is unfortunately still not reimbursed in the Netherlands.
I hope with your support to raise the necessary amount.
Below is the link to this crowdfunding campaign:
https://gofund.me/4da94339
How it all started:
Ironically, on a holiday in Austria in 2012, I started with an angina attack (severe laryngitis), so severe that I ended up in hospital in Zell am See. I lay here for several days and was only given liquid food through a tube because my throat was so swollen that it was not possible to eat solid food.
When I returned after this "vacation" I continued to suffer from so-called residual symptoms, such as muscle cramps, loss of mobility in the left leg and arm, all of which could subsequently be traced back to this angina attack and in reality turned out to be an MS attack (also called a " called scale").
If I myself look back in the past, I already got MS at a fairly young age, only the complaints I had at the time were not associated with MS.
Since the diagnosis I have already tried different forms of medication, with unfortunately not the desired result. As a result of one type of medication, I was even hospitalized in December 2013 with Steven Johnson syndrome, a rare and unpredictable immune reaction to certain drugs.
Right now, every 6 weeks, I'm on a Tysabri treatment, which is an infusion of a protein that's similar to my own antibodies. Unfortunately, there are also risks associated with this, namely an increased chance of the JC virus, which can cause a serious infection of the brain.
The disease has now left its mark on me. I don't have everyday life like the people around me. I have constant pain that is somewhat suppressed by the medication, but unfortunately it does not go away. In addition, one of the biggest consequences of MS is that I am very tired 24 hours a day. Partly because of this, I will always have to consider carefully whether I participate in family activities, because these require a lot of energy from me. Energy that is much less with me than with many other people.
I am therefore forced to go to bed for 2 hours every afternoon to recharge my energy level as much as possible, so that I can spend the rest of the afternoon with my family. At night I usually go to bed earlier than my children.
Besides the fact that I suffer a lot from this disease physically, I also experience more and more the mental "damage" that it entails. From a very exuberant active person to someone who becomes increasingly dependent on those close to her.
I am well aware that stem cell therapy will not cure my MS, but that it will slow down and/or even stop my decline. I therefore want to do everything I can and seize every opportunity to keep my life as bearable as possible and to be able to enjoy daily life with my family again, like many other people.
I hope to achieve my goal with your support. I am very grateful to you for your support.
Lieve mensen,
I am Nicole, 46 years old and I have been diagnosed with MS since I was 36. I am married with 2 children, a daughter of 13 and a son of 12. So both children were quite young at the time of diagnosis and they were dealing with a mother with a chronic illness.
Fortunately, there is a special therapy where they perform a stem cell transplant. Stem cell therapy unfortunately offers no chance of a cure, but it does ensure that the deterioration is inhibited or even stopped.
For the stay and the therapy the costs vary from EUR. 60,000.= to EUR. 100,000,= which is roughly equivalent to the cost of 1 year of heavy MS medication that I have been taking for 10 years. As has been regularly written in the media, stem cell therapy is unfortunately still not reimbursed in the Netherlands.
I hope with your support to raise the necessary amount.
Below is the link to this crowdfunding campaign:
https://gofund.me/4da94339
How it all started:
Ironically, on a holiday in Austria in 2012, I started with an angina attack (severe laryngitis), so severe that I ended up in hospital in Zell am See. I lay here for several days and was only given liquid food through a tube because my throat was so swollen that it was not possible to eat solid food.
When I returned after this "vacation" I continued to suffer from so-called residual symptoms, such as muscle cramps, loss of mobility in the left leg and arm, all of which could subsequently be traced back to this angina attack and in reality turned out to be an MS attack (also called a " called scale").
If I myself look back in the past, I already got MS at a fairly young age, only the complaints I had at the time were not associated with MS.
Since the diagnosis I have already tried different forms of medication, with unfortunately not the desired result. As a result of one type of medication, I was even hospitalized in December 2013 with Steven Johnson syndrome, a rare and unpredictable immune reaction to certain drugs.
Right now, every 6 weeks, I'm on a Tysabri treatment, which is an infusion of a protein that's similar to my own antibodies. Unfortunately, there are also risks associated with this, namely an increased chance of the JC virus, which can cause a serious infection of the brain.
The disease has now left its mark on me. I don't have everyday life like the people around me. I have constant pain that is somewhat suppressed by the medication, but unfortunately it does not go away. In addition, one of the biggest consequences of MS is that I am very tired 24 hours a day. Partly because of this, I will always have to consider carefully whether I participate in family activities, because these require a lot of energy from me. Energy that is much less with me than with many other people.
I am therefore forced to go to bed for 2 hours every afternoon to recharge my energy level as much as possible, so that I can spend the rest of the afternoon with my family. At night I usually go to bed earlier than my children.
Besides the fact that I suffer a lot from this disease physically, I also experience more and more the mental "damage" that it entails. From a very exuberant active person to someone who becomes increasingly dependent on those close to her.
I am well aware that stem cell therapy will not cure my MS, but that it will slow down and/or even stop my decline. I therefore want to do everything I can and seize every opportunity to keep my life as bearable as possible and to be able to enjoy daily life with my family again, like many other people.
I hope to achieve my goal with your support. I am very grateful to you for your support.
Lieve mensen,
ik ben Nicole, 46 jaar en sinds mijn 36e is bij mij MS gediagnosticeerd. Ben getrouwd en heb 2 kinderen, een dochter van 13 en een zoon van 12. Beide kinderen waren dus vrij jong ten tijde van de diagnose en ze te maken kregen met een moeder met een chronische ziekte.
Gelukkig bestaat er een speciale therapie waarbij ze een stamceltransplantatie uitvoeren. Stamceltherapie biedt helaas geen kans op genezing, echter zorgt er wel voor dat de achteruitgang geremd of zelfs gestopt wordt.
Voor het verblijf en de therapie variëren de kosten van EUR. 60.000,= tot EUR. 100.000,= hetgeen ongeveer gelijkstaat aan de kosten van 1 jaar zware MS -medicatie die ik al 10 jaar gebruik. Zoals al regelmatig in de media is geschreven wordt stamceltherapie helaas nog steeds niet vergoedt in Nederland.
Ik hoop samen met jullie steun het benodigde bedrag bij elkaar te krijgen.
Hoe het allemaal begon:
Ironisch genoeg op een vakantie in Oostenrijk in 2012 begonnen met een angina-aanval (zware keelontsteking), dusdanig hevig dat ik hiermee in het ziekenhuis ben terechtgekomen in Zell am See. Hier heb ik enkele dagen gelegen en kreeg ik alleen vloeibaar voedsel via een sonde toegediend omdat mijn keel zo opgezwollen was dat vast voedsel eten niet mogelijk was.
Bij terugkomst na deze "vakantie" bleef ik lasthouden van zogenaamde restverschijnselen, zoals spierkrampen, uitval mobiliteit linkerbeen en -arm, die achteraf allemaal terug te herleiden waren naar deze angina-aanval en in werkelijkheid een MS-aanval is gebleken (ook wel een "schub" genoemd).
Als ik zelf terugkijk in het verleden heb ik op vrij jonge leeftijd al MS gekregen, alleen werden de klachten die ik destijds had niet in verband gebracht met MS.
Sinds de diagnose heb ik al verschillende vormen van medicatie uitgeprobeerd, met helaas niet het gewenste resultaat. Als gevolg van één soort medicatie heb ik in december 2013 zelfs in het ziekenhuis gelegen met het Steven Johnson syndroom, een zeldzame en onvoorspelbare immuunreactie op bepaalde geneesmiddelen.
Op dit moment krijg ik om de 6 weken een Tysabri-behandeling, een infuus met een eiwit dat lijkt op mijn eigen anti-lichamen. Helaas zijn ook hier weer risico's aan verbonden, namelijk een verhoogde kans op het JC-virus dat een ernstige infectie van de hersenen kan veroorzaken.
De ziekte heeft inmiddels zijn sporen op mij achter gelaten. Ik heb niet het dagelijks leven zoals de mensen om mij heen. Ik heb constant pijn die door de medicatie enigszins onderdrukt wordt, maar die helaas niet wordt weggenomen. Daarnaast is een van grootste gevolgen van MS dat ik 24 uur per dag erg moe ben. Mede hierdoor zal ik altijd goed moeten overwegen of ik meedoe aan gezinsactiviteiten, omdat deze ontzettend veel energie van mij vergen. Energie die bij mij al stukken minder is dan bij menig ander persoon.
Ik ben dan ook genoodzaakt om elke middag 2 uur naar bed te gaan om mijn energiepeil weer zoveel als mogelijk op te laden, zodat ik de rest van de middag met mijn gezin kan doorbrengen. 'S avonds lig ik veelal eerder in bed dan mijn kinderen.
Naast het gegeven dat ik lichamelijk erg veel last heb van deze ziekte, ondervind ik ook steeds meer de mentale "schade" die het met zich meebrengt. Van een zeer uitbundige "spring in het veld" naar iemand die steeds afhankelijker wordt van de naasten om haar heen.
Ik ben mij er terdege van bewust dat stamceltherapie mijn MS niet zal genezen, maar dat het mijn achteruitgang remt en/of zelfs stopt. Ik wil er dan ook alles aan doen en elke kans aangrijpen om mijn leven zo dragelijk mogelijk te houden en weer te kunnen genieten van het dagelijks leven met mijn gezin, zoals menig ander mens.
Ik hoop dan ook met jullie steun mijn doel te verwezenlijken. Ik ben jullie zeer dankbaar voor jullie steun.
Organizer
Harm Stienen
Organizer
Echt, NL
