FfDn
Föreningen för de Neurosedynskadade
Holland
Marjolein tries to unite all Thalidomides in Holland
If there is few Thalidomide's in a country it is hard to make things happen. Marjolein van Riel nourishes a hope that UNITH is the answer.
In The Netherlands we do not have a society in which all Thalidomide's are united. We are all unique, incognito too. I am trying to mobilise other Dutch Thalidomide's to become a member of UNITH (the international body; United International Thalidomide's), though that is not an easy task.
25 born in The Netherlands
Approx. 25 were born in The Netherlands. Not many because it was not a free medicine and thanks to our Drug Law at the time. A couple of us (not all) joined in several meetings until we were ± 10 years old and then we didn't think it was worthwhile meeting, we had all grown into individuals, didn't want to be seen as the group of Thalidomide victims in the press, so we all went our own ways. It is really difficult to get into contact with all of them as not all addresses are available or up to date and some don't want to be "bothered".
Thalidomide still in use
Some time ago I found out that the drug is still used in The Netherlands in the treatment of AIDS patients in very specific cases and "well-controlled" as they say. The drug is imported from Chemie-Grünenthal , Germany , exactly the same manufacturer as in the 60s! which is unbelievable though true as we have written evidence. More research for information should be done in the various countries all over the world, together (in UNITH) we're strong and maybe we can find a way to stop the number of new Thalidomide babies being born — the second generation — increasing every month. It really starts you thinking about it all.
Therefore, it gave me a great feeling that I share that part with so many other”Thalidomide-born friends". It was funny to hear all these things, which you can hardly explain to others, being expressed, explained and shared at the various UNITH meetings. It was really a good lesson in life for me. We have so much in common and that's why UNITH is so important for world-wide informing, listening, sharing, talking, comforting, having mirror effect.
At the moment, I am interim Board member of UNITH, also quite a challenge and time-consuming. In the board we did meet each other twice (November/June) in the last period which is more efficient/convenient as we always have to communicate by phone/fax/e-mail, which is not so easy.
Manifestation of 40-years with Thalidomide
I was also touched with the "celebration" of the 40-years anniversary of Thalidomide. Thalidomide's manifested the memory by having a small ceremony at Chemie-Grünenthal in Stolberg , Germany (in October 1997), including a march and laying a wreath for all the Thalidomide's who died before/during/after birth. Hopefully, this ceremony served as an incitement for many Thalidomide's from all over the world to start a reunion for gathering/sharing/giving information to each other and to the world press.
Tourists, don’t miss Veghel
To tell you all a bit of my background; so am I 35 years old 1997. I live in Veghel (near Eindhoven ), in the South of The Netherlands. Unfortunately, tourists always go first thing to Amsterdam etc. though they really should visit "my part" of the country because it is so green and also for the hospitality and openness of the people who are living here.
I have 2 older brothers: Jack (43) and Bert (41) and one sister: Corine (37). I am the youngest in the family. My parents are living in Veghel too.
Quite OK for the disabled in The Netherlands
The situation for disabled people in my country is quite well, i.e. social security, adaptations, etc. Nevertheless, we have our day-to-day "problems" due to that disability. We always have to take the first step to calm other people. It definitely affects your being/personality in both a negative and positive way!!!
The situation for disabled people in my country is quite well, i.e. social security, adaptations, etc. Nevertheless, we have our day-to-day "problems" due to that disability. We always have to take the first step to calm other people. It definitely affects your being/personality in both a negative and positive way!!!
I live in an apartment since 8 years now in the middle of the (small) town, which is really handy because everything is within walking distance. I drive in a Peugeot 306, fully adapted, i.e. a flexible and lengthened steering wheel, including all switches of my dashboard (infrared) and my gear stick is lengthened as well.
or 14 years, I've been working for Mars, based in Veghel too, so I only have to drive for 10 min. to get to my work. I am the Divisional Coordinator for 2 departments: Commercial and Logistics, which is still a challenge every day, working at least 40 hours per week. I am an "organizer" and helpdesk. As Mars is a world-wide company it is really interesting to have the whole world visiting and calling you.
Fluent in five languages
I am happy to speak various languages, i.e. Dutch (!), English, German, French and a little bit of Spanish, so you can communicate with many people in their own language, which makes life much easier, as well in my job as in my private life. I never know what my day will look like when I come in the office in the morning, so I'll never get bored I guess. I am a true "service-oriented" person, love to help other people with their questions/problems, and always am eager to know more than others, asking questions in order to learn every day, which makes life interesting if you ask me. You have to do it yourself, make the challenges!
Lucky so far
I have said this before to others:
It may sound strange, though I really feel that I was very lucky so far in my life. Of course, everybody have their ups and downs, though I never had a lot of set-backs.
Great parents
My parents were/are great. They raised me just like any of their other 3 children, tried not to spoil me or protect me too much, punished me too, scheduled me in as well for the various "duties", no exceptions, challenged me all the time and that made me the way I am today (personality-building).
This feeling was only confirmed when I heard all the — often sad — stories of the other Thalidomide's. I never had to go into hospital for a long time or in therapy, was never left in the lurch; neither do I have to go through pain every day (maybe thanks to my "sporting past").
Ex elite swimmer
For 9 years I was a sports swimmer in the Dutch team, competing in national/European/World and Olympic Games. This was a great time, I've learned a lot: learning my limits, to win and loose, be with other disabled persons and listen to their "stories", so many nationalities together with one thought: sport!, no discrimination for what you are/look like, so a terrific time.
Love to travel
A strong confidence in my own capabilities perhaps paved the way for travel as my favourite hobby. I love to travel and that's why I've seen quite a lot of the world so far, i.e.: Indonesia, Sri Lanka, South-Africa, Egypt, Tunisia, Mexico, Florida, Dominican Republic, several states within America and most European countries. Next one(s) on "my list" is/are Australia/New-Zealand. Who knows!
Penguins at Boulders Beach , South-Africa I toured South-Africa on a vacation together with my friend Ria.
I like reading, though unfortunately don't have time to do a lot of it. I love music, played the electric organ for years, but - again - lack of time. There's always music wherever I go, love to go to the theatre and especially to see musicals, I've seen most of them, all over the world! I have been a singer in choirs and vocal groups me as long as I can remember!
Think positive
You have to be conscious of what your body is capable of and take good care of it, don't overstress it, find your limits and use it then to the full (a body adapts easily, is very flexible).
You have to think positive. Think of what you can do instead of cannot do. It will make a world of difference. Use your good sense of humour - one of our common factors. Pity of other people is the worst they can do to you or you can do to yourself. I am only disabled from the outside, not the inside!!
Living in an "able-bodied world/environment" doesn't mean that I have to stress myself all the time in order to be "normal". This is just ME and MY LIFE, no acting, nothing special.
I live such an "ordinary life", that I usually tend to forget that I am not a "standard" person. All my friends, family, colleagues, etc. treat me as "Marjolein", not as a disabled person - luckily!!
It is the way it should be and how I want it to be.
Marjolein van Riel
Tillbaka till toppen
Tillbaka till toppen
If there is few Thalidomide's in a country it is hard to make things happen. Marjolein van Riel nourishes a hope that UNITH is the answer.
In The Netherlands we do not have a society in which all Thalidomide's are united. We are all unique, incognito too. I am trying to mobilise other Dutch Thalidomide's to become a member of UNITH (the international body; United International Thalidomide's), though that is not an easy task.
25 born in The Netherlands
Approx. 25 were born in The Netherlands. Not many because it was not a free medicine and thanks to our Drug Law at the time. A couple of us (not all) joined in several meetings until we were ± 10 years old and then we didn't think it was worthwhile meeting, we had all grown into individuals, didn't want to be seen as the group of Thalidomide victims in the press, so we all went our own ways. It is really difficult to get into contact with all of them as not all addresses are available or up to date and some don't want to be "bothered".
Thalidomide still in use
Some time ago I found out that the drug is still used in The Netherlands in the treatment of AIDS patients in very specific cases and "well-controlled" as they say. The drug is imported from Chemie-Grünenthal , Germany , exactly the same manufacturer as in the 60s! which is unbelievable though true as we have written evidence. More research for information should be done in the various countries all over the world, together (in UNITH) we're strong and maybe we can find a way to stop the number of new Thalidomide babies being born — the second generation — increasing every month. It really starts you thinking about it all.
Therefore, it gave me a great feeling that I share that part with so many other”Thalidomide-born friends". It was funny to hear all these things, which you can hardly explain to others, being expressed, explained and shared at the various UNITH meetings. It was really a good lesson in life for me. We have so much in common and that's why UNITH is so important for world-wide informing, listening, sharing, talking, comforting, having mirror effect.
At the moment, I am interim Board member of UNITH, also quite a challenge and time-consuming. In the board we did meet each other twice (November/June) in the last period which is more efficient/convenient as we always have to communicate by phone/fax/e-mail, which is not so easy.
Manifestation of 40-years with Thalidomide
I was also touched with the "celebration" of the 40-years anniversary of Thalidomide. Thalidomide's manifested the memory by having a small ceremony at Chemie-Grünenthal in Stolberg , Germany (in October 1997), including a march and laying a wreath for all the Thalidomide's who died before/during/after birth. Hopefully, this ceremony served as an incitement for many Thalidomide's from all over the world to start a reunion for gathering/sharing/giving information to each other and to the world press.
Tourists, don’t miss Veghel
To tell you all a bit of my background; so am I 35 years old 1997. I live in Veghel (near Eindhoven ), in the South of The Netherlands. Unfortunately, tourists always go first thing to Amsterdam etc. though they really should visit "my part" of the country because it is so green and also for the hospitality and openness of the people who are living here.
I have 2 older brothers: Jack (43) and Bert (41) and one sister: Corine (37). I am the youngest in the family. My parents are living in Veghel too.
Quite OK for the disabled in The Netherlands
The situation for disabled people in my country is quite well, i.e. social security, adaptations, etc. Nevertheless, we have our day-to-day "problems" due to that disability. We always have to take the first step to calm other people. It definitely affects your being/personality in both a negative and positive way!!!
The situation for disabled people in my country is quite well, i.e. social security, adaptations, etc. Nevertheless, we have our day-to-day "problems" due to that disability. We always have to take the first step to calm other people. It definitely affects your being/personality in both a negative and positive way!!!
I live in an apartment since 8 years now in the middle of the (small) town, which is really handy because everything is within walking distance. I drive in a Peugeot 306, fully adapted, i.e. a flexible and lengthened steering wheel, including all switches of my dashboard (infrared) and my gear stick is lengthened as well.
or 14 years, I've been working for Mars, based in Veghel too, so I only have to drive for 10 min. to get to my work. I am the Divisional Coordinator for 2 departments: Commercial and Logistics, which is still a challenge every day, working at least 40 hours per week. I am an "organizer" and helpdesk. As Mars is a world-wide company it is really interesting to have the whole world visiting and calling you.
Fluent in five languages
I am happy to speak various languages, i.e. Dutch (!), English, German, French and a little bit of Spanish, so you can communicate with many people in their own language, which makes life much easier, as well in my job as in my private life. I never know what my day will look like when I come in the office in the morning, so I'll never get bored I guess. I am a true "service-oriented" person, love to help other people with their questions/problems, and always am eager to know more than others, asking questions in order to learn every day, which makes life interesting if you ask me. You have to do it yourself, make the challenges!
Lucky so far
I have said this before to others:
It may sound strange, though I really feel that I was very lucky so far in my life. Of course, everybody have their ups and downs, though I never had a lot of set-backs.
Great parents
My parents were/are great. They raised me just like any of their other 3 children, tried not to spoil me or protect me too much, punished me too, scheduled me in as well for the various "duties", no exceptions, challenged me all the time and that made me the way I am today (personality-building).
This feeling was only confirmed when I heard all the — often sad — stories of the other Thalidomide's. I never had to go into hospital for a long time or in therapy, was never left in the lurch; neither do I have to go through pain every day (maybe thanks to my "sporting past").
Ex elite swimmer
For 9 years I was a sports swimmer in the Dutch team, competing in national/European/World and Olympic Games. This was a great time, I've learned a lot: learning my limits, to win and loose, be with other disabled persons and listen to their "stories", so many nationalities together with one thought: sport!, no discrimination for what you are/look like, so a terrific time.
Love to travel
A strong confidence in my own capabilities perhaps paved the way for travel as my favourite hobby. I love to travel and that's why I've seen quite a lot of the world so far, i.e.: Indonesia, Sri Lanka, South-Africa, Egypt, Tunisia, Mexico, Florida, Dominican Republic, several states within America and most European countries. Next one(s) on "my list" is/are Australia/New-Zealand. Who knows!
Penguins at Boulders Beach , South-Africa I toured South-Africa on a vacation together with my friend Ria.
I like reading, though unfortunately don't have time to do a lot of it. I love music, played the electric organ for years, but - again - lack of time. There's always music wherever I go, love to go to the theatre and especially to see musicals, I've seen most of them, all over the world! I have been a singer in choirs and vocal groups me as long as I can remember!
Think positive
You have to be conscious of what your body is capable of and take good care of it, don't overstress it, find your limits and use it then to the full (a body adapts easily, is very flexible).
You have to think positive. Think of what you can do instead of cannot do. It will make a world of difference. Use your good sense of humour - one of our common factors. Pity of other people is the worst they can do to you or you can do to yourself. I am only disabled from the outside, not the inside!!
Living in an "able-bodied world/environment" doesn't mean that I have to stress myself all the time in order to be "normal". This is just ME and MY LIFE, no acting, nothing special.
I live such an "ordinary life", that I usually tend to forget that I am not a "standard" person. All my friends, family, colleagues, etc. treat me as "Marjolein", not as a disabled person - luckily!!
It is the way it should be and how I want it to be.
Marjolein van Riel
Tillbaka till toppen
Tillbaka till toppen