Important Life Events

[Nonni]

Hey, Katie, I hope and pray that you have a very mild form of MS. It ran in my husband's family. His mother had it and she was in her late 82 when she died. She was worried that she might have passed it to her children, but none of the living children or grandchildren exhibit any symptoms.

Take care, sweetie!

Dasi, darling hope you can read this message soon. 

Hugs from Nonni

[Katie]

Thank you Nonni, just what I needed

[Paden]

I just found out the other day that my favourite half-brother's only son has Michado-Joseph disease, which is what killed my brother. It is passed along genetically to people of Portuguese heritage and it is similar to MS from what I've been told. He's been undergoing experimental treatment and so far, the progress is halted and reversing, so there is help, we hope. The worst part is, my brother had four children and they all have this time bomb hanging over their heads, unless they get gene tested to see for sure. If they test positive, the insurance companies will refuse to cover them for it because it would be a known pre-existing condition. I hate insurance companies...

[Theraven]

Genetic diseases are no joke...

My oldest brother was healthy as any of us one moment. Then all of a sudden, just before turning ten, he started having multiple seizures every day, and soon had troubles walking and several other problems. Less than a year later, he died.
Much later, it turned out he had an extremely rare genetic disease, one both the parents has to be carrier of.

I just pray and hope that neither me nor my other big brother (or his sons or my future kids) are carriers...

One of my former english teachers had mild MS. Been a few years since I last saw him, so I think he's nearly 60 now.

[Katie]

What on earth is MS?

What disease was it raven?

I hop none of you are too!

[soulofthesea]

Katie, MS is just an abbreviation for Multiple Sclerosis, which is a chronic disease that attacks the central nervous system and is often unpredictable and symptoms varying from person to person. It's a form of muscular dystrophy, since symptoms include loss of muscle function, and irreversible muscle tissue damage. Some people with MS are still able to lead productive lives, have a normal life-expectancy, and the majority of people diagnosed with MS don't become severely disabled.

Hey, the Katy Ram Challenge is an MS-150 recommended bike ride, so I have to know a little bit about the disease!

[caffeinated.joy]

MS is Multiple Sclerosis. There is literally a crap ton of info out there on the 'net for you to find. Years ago, I used to work with a woman, also called Joy, who was voluntarily taking a demotion to a position in the company with fewer responsibilities, because she had MS and it was getting in the way of her ability to do her job, which I was hired to take over.

Genetic conditions really are no joke and it's unfortunate so many insurance companies have to be so pin-headed about it.

[Theraven]

What disease was it raven?
I hop none of you are too!

I can't remember, and would need the paper with the name on it to even spell it (it's a long and difficult name, and even mom needs that paper). Mom told me that as far as the doctors knew, very few people in the world has ever had this disease, none lived longer than around their twenties, if that. Since it's this rare, and since both parents must be carriers (it's a reccessive disease) I'm not very concerned. But there is always a risk...

My brother also got some medications he never should have gotten, and as a result his liver failed. If this had not happened, he could have lived much longer than he did. He probably would not have grown very old, but maybe he would have lived to meet his first nephew, or maybe both. Who knows?
My oldest nephew knows he has an uncle in heaven, his only uncle, and he often asks about him.

In our living room mom has a little corner dedicated to my brother. Pictures, things he made or we made to him, fresh roses, some cute angel figures, and a candle she lights up once in a while. There is also a picture of him in the hospital bed, just after he died. When I was little, I always wondered why his skin was yellow on the picture. Now I know it was the liver failure.

It was a shock to see my grandmother's skin turn yellow when she was sick (stomach cancer). Everyone just thought she had some bad case of stomach flu or something at first. I was ironing some clothes for her when I noticed her skin had a yellow tint. She had some yellowish curtains in her bedroom, and I remember I wished so strong that the color came from them, because I knew what that yellow color might mean. About a week later or so, they figured out about the cancer. She was so sick we thought she would die right there and then. She lived for three more years (can't say the old lady wasn't tough) but I remember very well when the yellow color started to return. She passed away not long after.

[Katie]

Luckily, insurance companies cover me, because no one had any way of telling until very recently...

MS sounds... horrid.

[Nonni]

Yes, Katie, MS is horrid, as is all disease. But the level of severity and quality of life differs greatly from one form to another. My mother-in-law led a very full and productive life. She was surrounded by children, grandchildren and great-grandchildren until her death. She had more pain from arthritis than from MS.

The entire family suffers and continues to carry a burden of grief long after losing a child or sibling.

And then the logic of insurance companies revolves solely around the all-mighty dollar - they are in business to make money, that is their bottom line. Moral obligation has no room in that realm.

[Katie]

Genetic diseases... UGH. I mean, I'm okay with knowing I have one, but we're talking me nephew? No! I refuse. You know... my brother could have been a carrier of whatever I have, and then how would his children turn out? 

[caffeinated.joy]

It makes me glad I live in Canada, where we have universal health care.

[Pixykid99]

I feel sad about all the genetic diseases that make our lives ill. But I have some happy news. I finally have a gig as a lead singer in a fundraiser for the Cancer Council in Australia (http://www.cancer.org.au/Home.htm) so, I can get my name out there and help cancer research too!

[caffeinated.joy]

That is awesome news and it really touches close to home for me. I fought childhood sarcoma when I was in my early teens and my sister had a brush with breast cancer a few years ago (one of my aunts and my maternal grandmother died from breast cancer). They caught it in my sister early on, which was good. It doesn't end there, sadly. My father passed away nine and a half years ago from lung cancer less than two months after going into remission with throat and mouth cancer. Any chance I get to support cancer research here at home I take.

Good luck with your fundraiser!

[Katie]

Pixy that is jut amazing!!!