Congenital Rubella Syndrome Support Group
Hi guys. Good morning, good afternoon or good evening, wherever you may be. Todays video is a little bit different to the videos I normally do on this channel. Uh… It’s a very different video for a reason. And that reason being, is that I wanna get some extra information out to you guys. As you see from the video title above the screen, this video is called Congenital Rubella Syndrome. And I can already hear you guys shouting ‘what in heaven’s name is that all about?’ Well, I’m gonna tell you. Uh.
You guys, well most of you guys are regular viewers. I think due to this video title, some of you are probably new. The regular viewers out there will know, that from watching my vlogs and, from watching my other youtube videos, you’ll know that I’m visually impaired. You’ll also know that I use a wheelchair. If you read my blogs you’ll also know that I suffer from other medical illnesses or conditions as well as. They’re not so visible and they’re things that I normally don’t talk about on youtube. But today I’m going to. Congenital Rubella Syndrome is actually the disease or syndrome then, (because that’s what it is), is what I have.
And it’s the reason why I’m visually impaired. It’s also the reason why I make use of a wheelchair. And it’s also the reason for some of the other things that I have to deal with in my daily life as challenges. If you read my blogs, you’ll also know that I suffer from incontinence. You know maybe that I have some slight hearing impairment. You may know for example that I have difficulties expressing my feelings and emotions, when it comes to letting people know my needs and my wants and how I feel. All of these other things that I have difficulties with, are also related to Congenital Rubella Syndrome. It’s supposed to be a rare disease.
If you actually go and look at the numbers on google, you’ll realise it’s not rare at all. But by government standards, it’s a rare disease. And it does feel like a rare disease because not many people know a lot about it.
I can go to a doctor and I can tell them I have CRS, which is the short term for Congenital Rubella Syndrome. They will look at me like I’m a weird person. Because they’ve never heard of it before. Or if they have heard of it, they’ve never seen a patient with it before. So it does behave like it’s a rare condition, although like I’ve said, if you go and look at the numbers, it’s… there are a lot of people that suffer from it.
And it’s not rare at all. It’s a condition that happens because of the Rubella virus. Also known as German measles. And when a pregnant woman contracts that, particularly in the first 12 weeks of pregnancy, It can affect the unborn foetus and it can cause a lot of damage. So… uh, yeah… It causes all of the conditions, which…. It can cause all of the conditions, which I have.
It can also cause varying degrees of these conditions. And, yep… It’s something we get to live with as a daily challenge. I don’t like to call them struggles, I like to call them challenges.
Uh.. It can also happen later in pregnancy. But because the foetus is more developed later in pregnancy, it’s less likely to cause so much damage. So, there’s less risk. Uhm… anybody that’s born with CRS, Is born with a triad of different illnesses.
And they vary, depending on the individual person. The triad includes a heart defect, a visual impairment, and a hearing impairment. And like I’ve just said, they vary. So, I for example, am almost blind. My hearing impairment is… very light. It’s not… I don’t want to say it’s non existent, but it’s not the biggest challenge that I encounter in my daily life. I also have a heart condition, but it’s just one condition.
I know other CRS Warriors, as we call them. They’re the people that have Congenital Rubella Syndrome. I know other CRS Warriors, who have 4 heart conditions in one. And to be honest that freaks me out a little bit.
Because that could have been me. And… I, I don’t know. I’m really thankful that I don’t have to live with four. And as far as I know, mine is under control. Uhm… other warriors are more deaf than me. Some of them wear hearing aids. Some of them need to use sign language as a means of communication.
I’m quite lucky in the respect that you guys don’t even notice that I have a hearing impairment at all. Which is pretty cool. Those that are more hearing impaired than me, I have noticed have more vision than I do. So, they’re lucky again, because they don’t have… they don’t have to suffer both of those conditions at once. I don’t know… What would you guys like to lose, if you were gonna to lose something? Would you like to lose your hearing, or your vision? There are also late onset things that occur later in… later in the development, so, after birth. As you grow older there are also other things that can develop. For example, I’ve mentioned my incontinence problem. That’s something that can develop.
Issues to do with muscles and bones. Such as Rheumatoid and Osteo arthritis. They can develop. We can develop… We can develop depression and anxiety, and other neurological conditions like that. So it’s… We call it the disease that keeps giving. Because it really does present lots of challenges throughout your whole life. It’s not just something you’re born with, and you can figure out and deal with.
It’s going to continue presenting me with challenges. And it’s going to do the rest, for, the other warriors that I know as well. But luckily, there’s a support group out there for people like me. Who have CRS. It’s also for people out there who are connected in some way with CRS. So caregivers, family, friends. People who just have a general interest and want to learn more.
And that group is this group that’s here on my screen. It’s a group that I created. Which means that I’m the admin of the group. But it doesn’t mean that it’s my group. The members make this group. It’s their group. I pushed the buttons. All I did was push the buttons.
And I made it for them. So they are the ones that get to decide what is discussed in the group. Uh, it is widely CRS related but, we can also discuss other things. We like to talk about music. We like to talk about the things that we’re thankful for. And every Friday we discuss what we’re gonna do at the weekend.
We discuss normal things, as well as the illness. It’s a support group, which means we’re allowed to… We’re welcome to share our uh… experiences. Our stories. We also use as a teaching tool so that we can learn more about each other and about the condition in general. Because, like I said, it’s the disease that keeps giving. You can’t possibly know everything at once. And some people don’t even know they have it. I uhm… personally, didn’t know a lot about it up until four years ago.
When I moved here to the Netherlands. I knew that I was visually impaired and that I had a heart defect. I wasn’t aware at the time that my hearing is as bad as it actually is. We thought… well… I thought I was just not listening as well as I could. So uhm… and there are other people like that. And there are people in this group that have just learned that this exists and this is what they have. And now they want to learn more about it.
The group is called CRS Europe. And the reason why it’s called… One of the reasons why it’s called CRS Europe is because of course It’s European based. I live in the Netherlands. So we….
We are a European based group. And we would like to have more European based members. Who are warriors, or who are connected in some way to CRS. So the carers, the friends, the family.
Uhm… but that doesn’t mean that other people aren’t welcome. We have Americans in the group. Uhm… so… yeah, everybody who has a connection in some way to CRS is welcome. And we don’t shut anybody out of there. We have a resident designer in the group. They… uhm… designed this awesome banner for us. Which is our custom banner. It’s our logo.
And I don’t know whether you can read the screen, but we encourage a positive, uhh.. A positive attitude in this group. So, it says ‘We don’t suffer from Congenital Rubella Syndrome. It suffers from us!’ Because we’re the ones who are battling it.
And we’re trying to defeat it. And trying as best as we can to live a normal independent life. So, yep. We’re a support group.
We have fun. We uh… try to help each other with difficult situations. But we also try to encourage each other to have a positive attitude. And to stay positive. Because sometimes that’s the only way to get through the difficult challenges that we sometimes face. Not only do we have a resident… Have a resident designer.
But we also have a resident blogger. Yes… yes, yes. I know. You guys are thinking ‘But you blog and Jessica blogs’. That’s correct, we do. Jessica blogs in Dutch about her experiences of being a care taker for me.
Somebody with CRS. And they are extremely interesting blogs. And you guys also know that I blog about my daily challenges as somebody with CRS. But, Uh.. I also blog about other things. Because I’m a tech freak and we travel. And yeah, it’s not… My blog site is not just CRS based. This one however, from our resident blogger is CRS based and this lady shares her experiences and life challenges related to Congenital Rubella Syndrome.
So, If you wanna learn more about it, this is a really great place to do that. Because you can learn what it’s like to be deafblind. You can learn what it’s like to struggle in different situations with vision and your hearing. And not only that, but CRS causes us to be small… Or many of us to be small for some reason. You can read about those challenges.
It’s a really great site. It’s called The CRS Warrior and the warrior is actually a part of the JustConnect team. Which means if you go to wwww.justconnect.eu , You’ll find her face there. And you can click on it and you will come to this site. Which is actually justconnect.eu/CRSWarrior I’ll put all the links in the description. So if you’re interested in learning more. This blog site’s a good way to do that. If you would like to meet the CRS Warrior, or if you are interested in learning more about CRS in general, and interested in supporting us, and interested in encouraging a positive attitude, we welcome you to join our group.
If you have CRS yourself… Please, I hope the title up here (laughs) triggers some new members. Because I’m sure there are others out there who have CRS and probably…. Don’t have a place to go.
Well, now you do. You’re welcome. Come and join the group.
Uh, this is what I wanted to share with you guys today. There is something out there for people with Congenital Rubella Syndrome. And I’m one of them. I am a part of it. And do you know what? I’m… as much as it presents me with difficult challenges that make me sometimes scream and shout and want to bang my head off a brick wall. I’m actually super proud that I have it, because it’s made me and it’s part of me. And it also has allowed me to meet some really awesome people.
And it’s going to allow me to meet some, one… really awesome person. Oh… that’s another vlog for another time. Haha.
Another vlog for another time. Yeah, yeah. I’m dropping hints.
But uhm… That’s what I wanted to share with you guys today. I’m gonna stop rambling now. I appreciate you guys listening. And I appreciate you guys watching the video. Thank you very much. I hope that the information is useful and you can get something out of it. Thanks very much for watching and until the next video, be good….
And if you can’t be good, have fun!.
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