First, I want to express my gratitude to Simply Silent and its community, and to Sara and Donna who guided me here.
I’m a retiree with a hearing loss that began in childhood, and has become much worse with age. At age seven, I was struck with an illness that kept me out of school for a year. I have no memory of that year, although I can remember events before and after. Everything I know about it was told to me by my parents shortly thereafter. There are a lot of missing details, but I can no longer ask them, they are long gone.
I do remember a medical examination not long after the year of illness for a hearing deficit that had become apparent. My parents had previously told me that chorea was cause of my illness. On the occasion of the medical examination we were told that the hearing loss was caused by high dosages of aspirin given to me during my illness, not by the chorea itself.
Chorea is an abnormal voluntary movement disorder, one of a group of neurological disorders called dyskinesias, which are caused by overactivity of the neurotransmitter dopamine in the areas of the brain that control movement. Chorea is characterized by brief, irregular contractions that are not repetitive or rhythmic, but appear to flow from one muscle to the next.
The term chorea is derived from the Greek word for dancing and was applied initially to epidemics of dancing mania in the Middle Ages, in which large numbers of people danced together for days. Many such dances were described, but the most renowned was chorea Sancti Viti. Sydenham used this term in his Schedula Monitoria to describe rheumatic chorea in 1686.
My recent research indicates that my illness must have been a specific type of chorea, Sydenham chorea, also called St. Vitus Dance. It is considered to be a manifestation of rheumatic fever (streptococcal infection) with a typical onset between the ages of 5 and 15. This type of chorea is believed to result from an autoimmune mechanism that occurs when the streptococcal infection causes the body to make antibodies to specific brain regions.
Inasmuch as it manifests as a neurological disorder, I think that it is a suspect as a direct cause of the hearing loss, but this is a moot point.
While hearing aids were available at the time my hearing loss was noted, they were very clunky, and I felt that I could get by without them. My parents didn’t object. I did manage reasonably well during my school and college years. My coping strategies included asking my teachers to seat me at the front of the class, and using lip reading.
As I grew older my hearing functionality has become increasingly problematic, and I have been wearing a hearing aid in recent years. Note that I said this in the singular. The hearing in my left ear was never very useful. But, it has become a profound nerve deafness to the point that whatever little sound comes through is severely distorted. While my hearing aid does a good job of amplifying sound in my right ear with reasonably low levels of distortion, functionally I have monaural hearing. That is a major frustration, which will be the subject of a subsequent posting.
January 26th, 2006 at 10:16 pm
Hello Sid. It’s great that Sara and Donna have led you here and very good to see you. So, a warm welcome from someone who finds a lot of support and friendship from the great people on this forum.
January 27th, 2006 at 10:02 am
HOWDY SID
welcome abord 
I look forward to your postings 
January 27th, 2006 at 10:26 am
Sid, welcome!
Great to see you over here.
Very interesting information about chorea. I never knew much about it.
You lost your hearing at about the same age as I. (Mine went haywire just before my 6th birthday). I also refused hearing aids until recently. (after 15 years of doing without them, I decided to give digital aids a try, and obtained my first pair in the spring of 2001.)
I’m looking forward to reading more posts by you. You approach things in a very thoughtful manner.
January 27th, 2006 at 10:40 am
yup and me (I) My hearing started to detiorate at the age of 7 also, and I only got aids when I was about 17 and its only now im getting upgrades! to bilateral aids, of which ill have around my birthday in march!!
January 27th, 2006 at 4:03 pm
Sid – after reading Sara and Lette’s posts, I realise that I should have said that I came to the whole deafness thing a bit later on – during my 20s (I’m now in my late 40s).
The chorea thing is very interesting. I have epilepsy which sometimes manifests itself in quite similar ways to some of the things you describe.
January 27th, 2006 at 6:46 pm
Hiya Sid.
Nice to meet you, and welcome to SomewhatSilent.
I note that there is now a mix of people who have become ‘deafened’ as it were, and those of us who were born with our hearing losses (which may or may not have stayed stable).
It is interesting to see the difference in experience of hearing aids, perception and coping mechanism that we all use. I look forward to reading more of what you post. Autoimmune disorders are well known as a cause of hearing losses such as yours. Also they are the hardest to compensate for with hearing aids as it is often the nerve which is damaged.
I have a bilateral hearing loss which is mostly conductive as my middle ears are a mess, but also partly sensori-neural in that my cochleas are damaged too. I wear a bone anchored hearing aid because I have microtia and atresia (malformed outer ears and ear canals).
I wear a BAHA which is a bone conduction aid attached to an abutment which implanted in the mastoid process behind my right ear. I’ve had that since 1992, prior to that I wore an alice-band style bone conduction aid. I should really have bilateral BAHAs but the NHS is unlikely to fund that for me (I live in England).
I have recently started to learn British Sign Language to suppliment my communication options. I found university extremely difficult to handle both socially and academically. My speech is good so people often forget that I am still deaf and need to lipread - which as you will know is tiring. I’m now in my 3rd year of classes and hope to pass my stage 2 exam in May.
I look forward to reading more of your posts.
January 28th, 2006 at 12:59 am
Welcome, Sid!