IN response

[Guest guest]

Ok...let's say this over...I was not suggesting that genetic testing

is the ANSWER. What I am saying is that there are thousands of

people with this disease and have no clue why. At least 75% of the

doctors treating these people have no idea about this test. I was

told when I had my first stent placement that I was being sent to a

doctor who is noted in this disease and if anything could be done,

he would be the one to know. He is also a professor who teaches

interns at the hospital where he is on staff. When my surgery was

over, he came out of the operating room smiling and saying he found

the problem that I would not have another attack because he found

that my tubes inside were backwards and mis-shapen. I was good for

7 whole months, believing I was cured and wham, right back in the

hospital with an even worse episode. It took a year and a half to

get this genetic test done and talk to a genetic counselor who told

me that mis-shapen tubes are an identifier of people with CF with

only pancreatitis as a symptom. I felt cheated and scared that

maybe the surgery was a mistake. Because now after I have had a

second stent placement, I have been in the hospital almost every

other week. Before any of the surgeries, I averaged about 5 to 6

times a year. I didn't mean to make anyone angry, but knowledge is

power and just to know why is in itself satisfying. I ask you

this....if you had a disease and noone could tell you why you have

it, wouldn't you do anything and everything possible to find the

cause? Maybe genetic testing won't find anything, but doesn't that

rule out some major causes? Either way it is a good idea because if

you do have the gene, you know where to be looking for answers and

will be talking to the right people and if not, you won't be wasting

your time or left wondering. Either way its a good outcome.

Sincerely, Dennis

[Guest guest]

HI Dennis,

I don't remember welcoming you to the group so first and foremost... WELCOME!!!

I have 5 kids, and I have just recently been diagnosed with CP... I've had the

pain for most of my life off and on, but in the last four years I have been put

through more tests than has little pills... No kidding there. I have my

divisum diagnoses, along with CP, but I am still a little curious to know if

this is genetic like the divisum, and if any of my kids inheirited the defect

from me. (I got it from my dads side of the family, most likely from his

Mothers side) My middle son has tryglyceridemia already at 11 and I worry that

it may get him in trouble with his panc or worse his heart. So I have

requested my Pediatrician get them all tested for this gene for Hereditary panc.

I so do NOT want them going through this.

I hope that you will stay here with us for a good long time and I wish you

painfree (or as close to it as you can get) days and nights! {{{HUGZ and

Prayers}}}

(in Michigan)

---------------------------------