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WTF, Why are we all so different?
- Thread starter Blue
- Start date
I never knew there were so many different mutations that people can have. The way I always saw it is CF is CF and regardless if it effects people differently... eventually if effects the entire body! But, we all do the same treatments, get sick and have to be hospitalized the same. Some people suffer with stomach problems more than others, but we all suffer from lung complications. I guess it's like having cancer. There are several different types... but the bottom line is that we are all the same and we all go through various complications and treatments, but we ALL live and breathe the same air and everybody dies from something.
This question use to haunt me most of my life. My brother struggled his whole life while my symptoms have been mild in comparison. I think most of it must be genetic. Somewhere below the DF508 we got different things. Now I just try to live life to the fullest. I appreciate the fact that I was given opportunites and blessings that my brother never had. Also at some point you realize everyone has struggles, there just different than yours.
This is a very interesting topic...i have been curious about this for years. I am 33/ddf508/female and my fev is 110%: I was diagnosed at the age of 2 (only because my sibling was dx'ed ) I had spent many years being non compliant - even smoked for 10years (nasty habit - i quit 5 years ago) ive always excercised - that is one thing i did right and i always ate alot of fruits and veggies...im not sure how much anything has to do with my health. I know i have a pretty significant genotype, but ive always been healthy (pancreat sufficient, too )I. My sibling is also generally healthy (though "they" have pretty bad digestive issues.) It is sooo stinking confusing! I have kids now and i'd like to know what my future holds for me! Am i going to be healthy, hhealthy, healthy and then one day get sick and die a few weeks or months later? Will i start declining and then decline fastter and faster? It scares me! Sorry for all this!
azdesertrat
New member
This is a great topic, thanks for bringing it up.
From my perspective, attitude is everything. I remember the doctor 'whispering' to my Mom "he probably won't live to age 10". This was when I was 8.
It seemed like everytime I passed an 'expiration date', a new one was given.
I always figured, what the hell, if I ant gonna live long, I might as well enjoy the time I have. I didn't graduate from high school becaue I was too busy smoking pot with my 'friends' at the river, or wherever.
I started realizing I better make at least short term plans when I failed to die by age 18.
I never had many lung problems until my mid-later 30's. When they started, I went downhill fast! Before I knew it, I was on the transplant list.
Thank God that miracle came my way.
Now I just take every day as it comes. If I wake up, its a good day!
But enough of my worthless rambling. To sum it up, I truly believe attitude is probably 85% of the equation.
Best of luck to you, keep up the Good Fight!
From my perspective, attitude is everything. I remember the doctor 'whispering' to my Mom "he probably won't live to age 10". This was when I was 8.
It seemed like everytime I passed an 'expiration date', a new one was given.
I always figured, what the hell, if I ant gonna live long, I might as well enjoy the time I have. I didn't graduate from high school becaue I was too busy smoking pot with my 'friends' at the river, or wherever.
I started realizing I better make at least short term plans when I failed to die by age 18.
I never had many lung problems until my mid-later 30's. When they started, I went downhill fast! Before I knew it, I was on the transplant list.
Thank God that miracle came my way.
Now I just take every day as it comes. If I wake up, its a good day!
But enough of my worthless rambling. To sum it up, I truly believe attitude is probably 85% of the equation.
Best of luck to you, keep up the Good Fight!
Gene modifiers...the same reason why my identical twin boys are SO different medically and in their personalities. That's the quick and dirty explanation...
Julie nailed it according to my doctor! My Cf team said it was previously thought that 90% of our DNA was 'junk', meaning it had no real purpose or function. They've just recently learned that there are gene modifiers in that 90% that will play a big role in determining the severity of our disease. This science is very new...and the role(s) these modifiers play isn't understood yet.
LookingforPeace
New member
I haven't read what everyone else posted yet.... So I apologize if I restate something someone else has already said.
This has a lot to do with the genes we have. Some genes are shown to create good outcomes with people with CF.
Some of us are pancreatic sufficient/insufficient. Therefore, we are or are not able to gain weight to assist with infections.
A lot a lot a lot is our environment. My mom always said that my CF outcome is 50% genes and 50% environment.
Diverse doesn't even begin to explain this disease. I have a very difficult time relating to people with this disease due to the massive spectrum upon which we are placed.
This has a lot to do with the genes we have. Some genes are shown to create good outcomes with people with CF.
Some of us are pancreatic sufficient/insufficient. Therefore, we are or are not able to gain weight to assist with infections.
A lot a lot a lot is our environment. My mom always said that my CF outcome is 50% genes and 50% environment.
Diverse doesn't even begin to explain this disease. I have a very difficult time relating to people with this disease due to the massive spectrum upon which we are placed.