As I have mentioned this site will be based around disability. I was born with, a condition known as congenital rubella syndrome, which is why this site is based around my thoughts and feelings on topics and issues around disabilities. To explain congenital rubella syndrome, basically it is a number of multiple disabilities and defects that come together under one umbrella causing one big syndrome. It is caused by the rubivirus, a viral infection, more commonly known as rubella, or German measles. Which when it occurs during the first few months of pregnancy of a woman, especially in her first or second trimester, can cause serious damage and harm to her unborn child.
When a woman contracts the rubivirus during the beginning of her pregnancy, the virus is passed from mother to child, through the mother’s blood stream via the placenta, in the same way a fetus takes food and oxygen. Once the virus is in the fetus’s blood stream, it spreads to the babies vital organs and causes a lot of damage.
As the baby at this point has yet to develop properly, and all the important organs and body parts are still growing, the virus can at this point cause sever and dire consequences for the growing child. The infection spreads throughout the body and attacks vital developing organs and body parts, causing the development of the fetus to become impaired and prevents the baby growing and developing properly as it should. It will usually attack vital body parts such as the brain, heart, nerves, spine, eyes, ears and other parts.
The baby has no way of fighting the infection, as it has yet to develop an immune system. Without that the baby has very little chance of fighting off the infection, and in some sever cases can cause miscarriage and the loss of the baby. Babies affected by the infection would be born with multiple disabilities and defects. Some typical symptoms in children born with CRS may include, some or all of the following;
- Sensory impairments,
- Deaf/blind, or having one or the other
- Congenital heart defects, or other heart problems
- Learning disabilities, and or difficulties
- Developmental delays
- Growth retardation
- Low birth weight
- Smaller head than average for the norm
- Enlarged liver, and or spleen
- Skin laisons
- Autism? This one is still debatable, and uncertain. It is not completely known if this is one of the symptoms or not. It is still being questioned to my knowledge.
- In sever cases miscarriage, or death after birth
Symptoms will vary from patient to patient. Each individual will experience the condition differently, from mild to sever cases, with either all or few of the symptoms mentioned. As with anything there is no one shoe fits all, and comes as a spectrum. The symptoms mentioned above is not a complete list, there are other defects not mentioned that can occur. The list would be too long if they were all added, but this should give you some idea of what the condition entails for some people who are born with the condition congenital rubella syndrome. There is no cure, but some symptoms can corrected with treatment.
While there are symptoms of damage from birth, it seems that as people with CRS grow, new symptoms can occur in adulthood too, as some symptoms bide their time and manifest later in life. For some people the damaged body and organs start to wear and tear, (not literally), the damage starts to occur as they grow, as the body cannot maintain it’s health and growth from damage to the body by the viral infection. So this is a life long thing, that continues to keep happening throughout different stages of life. It does not stop at just those symptoms seen at birth. Which goes to show how serious this condition really is.
In me the condition is very mild, you can read more on how the condition affects me in my about me page. I hope this gives you some ideas of the condition and you find this page informative. This is just a narrative of just one of the conditions I live with, and this page was made to inform and give you a little understanding and background for why I called the site ‘Under My Umbrella.’ It is simply based on the idea of congenital rubella syndrome being an umbrella of conditions that I have to live under. It’s not something that completely takes over my life, it’s just something that’s there. Just a small part of me that makes me a little different, but not less.