Late manifestations of Rubella?

Firebrand

Firebrand

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Has anyone has had any late manifestations of Congenital Rubella Syndrome?

I was a Rubella baby and was born blind in my left eye and profoundly in both ears. I also was born with a serious heart defect that was corrected by open-heart surgery when I was 6 months old.

Four years ago, I ended up with a brain lesion and spent months being a medical mystery. Since I had studied biology in college for 1 1/2 years, I did research in neurology to see if I could find any clues to my illness.

I have a step-father-in-law who went completely deaf 10 years ago. His sister also went completely deaf almost at the same time. The sister, who's a registered nurse, has said they had scarlet fever when they were kids and their deafness was a late manifestation.

That got me to thinking, what if there are late manifestations to the Rubella? So, I did a search along those terms. I was expecting something a bit simple, I guess. I got a lot of hits on the search. There are late manifestations of Rubella. I was horrified by my findings. It freaked me out. I've never read anything that would make my hair stand on ends for a week, figuratively speaking. The late manifestations are a long list of conditions and health problems.

:-o :eek: :eek2:

Now, I understand that this is information gathering of a number of those who were Rubella babies. And not every one of them get late manifestations of Rubella. I refuse to believe that my brain lesion was a result of the late manifestation of Rubella. Of course, docs don't believe that it is, either. Then again, they probably said that because it's so freaky to me.

This is scary stuff. I was just wondering if any of you who had congenital rubella syndrome have any late manifestations.
 
When siblings have deafness wouldn't it be appropriate to consider that there may be a genetic cause? Possibly dominant? 50% chance of inheritance by offspring born to a parent with a dominant genetic hearing loss.
 
my husband's birth mother had German Measles; he considers himself deaf w/o HA's and has one fully functioning eye. He has a heart murmur. He also has some other things physically ...but I honestly don't know if the murmur and any of the "other things" were present congenitally, or if they developed later as result of what you're talking about. I had never heard of it before now.
 
:type: Of course, it could have been genetic in nature with those siblings. But still, it just led to that question that I had to research on. :monkey:
 
I am a rubella baby too. All I know is that I was born deaf. I don't know about heart trouble or things like that. I am planning on getting a second opinion on my eyes. Few years ago, the doctors in Michigan told me that I will became blind. The doctor I saw in Arizona told me it is not so. He said it is from rubella. It had left its mark on my retinas but didn't blind me. I am hoping that the doctors in Michigan are all wrong.

Also I have smaller feet/hands. Jamie Berke (Deafness and Hard of Hearing - Deaf - Sign Language - Hearing Aids - Hearing Loss - Cochlear Implants - Ear Wax) is also a rubella baby. She also have small feet/hands. She told me that one with rubella also have a good chance of becoming diabetic. I got diabetes but it could be from my father - no way of telling which one it comes from. Jamie also list links about rubella: Growing Up Deaf - Becoming Deaf from Rubella
 
Oh, yeah. I have small hands and really small feet. I never knew about the risks of the late manifestations until I discovered it in my research. Yes, I did find that diabetes is one of those manifestations. I've been tested for diabetes plenty of times, but I have no diabetes, so far. The prospect of having the risk of losing my eyesight due to the retinopathy is scary.

I hope you get your eyes situation sorted out, Bufallo. I believe the rubella does leave it's mark on the retinas, and in some cases, leaves eyesight intact.
 
Here's a copy & paste from another website:

Rubella Virus Still Within Body
Monday May 10, 2004

I just got off the "phone," meaning an IM conversation, with an old college friend who is deaf from rubella. She told me that when she was tested for a health problem, the doctors discovered that the rubella virus was STILL within her body. This means that the Congenital Rubella Syndrome virus, if you are deaf from rubella, may still be within your body (and mine, as I am deaf from rubella too). This is important because studies are showing that people deaf from rubella are at increased risk for health problems. If that virus still lurks in the body throughout life, who knows what it can do? Rubella affects the entire body, not just the ears. Deafness is only one effect of congential rubella syndrome.


:eek2: :doh: So, you see where I'm going with this? It's really freaky. How come I never knew about this before I discovered the information from my research? :ugh:
 
No, I was not familiar with that website. I must have missed it during my research. Either that, or I had too much info to manage and had to upchuck some of the notes. You wouldn't believe the amount of notes I took. :eek3: Thanks for the link, Sallylou! :ty:

It's a nightmare scenario of mine......... To possibly be saddled with issues because of the Rubella. Before I came across the info on the late manifestations, I had always thought that when a mom has rubella while pregnant, then the baby is born with rubella in their system plus birth defects, and it's over. All you'd have to deal with is the current issues like deafness, blindness, etc. And live life as usual. But it's not so with congenital rubella syndrome.

It could be why I had that lesion in my brain. It could also be why I have chronic clinical depression.........But, I'm managing it as best as I can. I just hope I can prevent any further problems that could arise as a result of the Rubella.
 
sally, I didn't know about that site either.
my husband has small hands and has improperly-formed feet.
 
a couple of Summers ago when we had insurance he went to podiatrist and got a brace for his worst foot.
 
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