Photo Description: Codee’s Bitmoji holding a cup of coffee.
I promised you that we would get off the train and have a virtual cup of coffee somewhere. I would also answer your questions about me and my illness.
I’ve actually only seen two questions from you. They are both interesting questions. Both of which deserve an extensive answer. So I decided to answer each question in a separate blog. You can read the first answer below. I will answer the other one in the next blog.
I will be as honest and open as possible with my answers. I don’t have any bandages, nor will I put powdered sugar on top. It might therefore be difficult for some to read.
Can you tell us more about your condition?
Yes… I can certainly do that. Congenital Rubella Syndrome, also known as CRS, is a disease that an unborn child contracts if their mother becomes ill with rubella sometime in the first 12 weeks of pregnancy. The virus then travels on to the unborn child and affects all developments that happen at that moment. You can see the result after birth. Most CRS warriors – as I like to call them – are born with heart disease, hearing loss and impaired vision. There are also other problems and illnesses, but heart, hearing and vision problems are the classic symptoms for which Congenital Rubella Syndrome can be easily diagnosed. Neurological problems, especially autism or autistic related behaviors, epilepsy and problems with the muscles and muscle strength are also often diagnosed shortly after birth, but no two children with CRS are the same. What they get and how serious it is, is different for every child.
At a later stage in life, there are also what we call late onset symptoms. This can be anything, but the most well-known are diabetes type 1 and 2, sleep disorders, muscle and joint problems, problems with balance and memory problems.
If a pregnant woman gets rubella after the first 12 weeks of her pregnancy, the unborn child can still develop complications from the virus. Then, for example, they still have hearing loss, a visual impairment or a muscle disease. Then it is normally 1 or maybe 2 of these complaints that they suffer from. Rarely all 3. The consequences of this are also usually less severe.
If you’re wondering how CRS affects me, I have a laundry list of symptoms to list.
My birth mother got sick in the first 12 weeks of her pregnancy, so I have the 3 classic heart, hearing and eye problems. When I was born I had a heart attack, then the doctors found that I had a PDA. This was quickly closed.
I only have 5% vision and hearing loss of -35dB on the left – for this I wear a hearing aid, and -28dB on the right. I have type 2 diabetes, Spondylosis, Urinary incontinence, some autistic related behavior and problems with my short term memory. I also have reduced muscle strength, with some atrophy in the muscles above the knee, plus a problem with my balance. I often walk like I’m drunk.
Luckily this doesn’t make me feel hopeless. I am aware of my limitations, they require a lot of adjustments and work is not an option. The older I get, the more serious my health problems become. In my youth I had much more mobility and could do things that my body would now scream at if I dared to try. That is why the illness requires a strong character but I have not always been strong. Even now I sometimes struggle with it. But these days I am more open to adjustments and like to think in solutions. I have learned that a limitation does not necessarily mean that something is not possible. Sometimes it just means doing things differently to achieve the same thing as a healthy person. It takes longer and requires more patience, but there are plenty of options.
That’s why I feel I have a full and valuable life. I may not be able to have a job like the average person, but my brain still functions. I have hobbies and interests and like to learn new things. In my own adapted way and at my own pace, I do give my brain things to do. That’s why I’m alive and I enjoy it.
If you have any questions, I’d love to see them in the comments. I will answer them there too.
I recommend you grab a sandwich or snacks for next week. I still have a lot to say. Thank you for reading. Until then!
CRS Life 