to Debbie

[Guest guest]

Hi Debbie,

I was just reading your post and saw that you have Cystic Fibrosis. Do you have

the actual disease itself or just a gene mutation? Is CF the cause of your CP?

I have had CP and SOD (diagnosed only 5 years ago, but have had " stomach "

problems all the back to my childhood at about 6 years old). I do have a family

history. My grandfather died of pancreatic cancer at age 51. I am 35 yours old

with two boys (6 and 8) and a wonderful husband.

I really need to be tested for Hereditary Pancreatitis for many, many reasons.

I have been told from different specialists that it is secondary to my SOD and

also told that it is " congenital. " My oldest son " mimics " a lot of my stomach

problems that I had as a child, therefore, I really need to be tested.

If this is the cause of your CP (hereditary) would you mind giving me

information about it? I know that the University of Pittsburg does the testing,

but can you have your blood drawn locally and sent to Pittsburg? Also, what is

the " name " of the test?

If you have any information about this, I would truly appreciate you sharing

with me. If you don't, I apologize for assuming and hope that you are as well

as can be with having this Horrid disease.

Thoughts and prayers,

T.

email: nancy@...

[Guest guest]

, I just saw your post this a.m. I do so hope that you will keep

in touch, as I find it hard to find many persons with this diagnosis as

mine. Yes, it is a devastating disease. When you have the mutations

with two matches as I have then you have CF. If you just have one

mutation without a match then you may be considered a mutation with

unidentified matching. That does not mean that you do not have CF. It

only means that they may not have isolated your gene yet. I have

numerous infections of the lung. Pseudomonous for about 20 years and

staph. My PFT's have decreased 50% over the past year and my upper

airways are very scarred from the numerous progressions of the disease

and the infections. As you will see in some of the other posts I wrote

this A.M. I still try to maintain a very positive attitude. You can not

beat this disease but it is able to be lived with. I have excellent

treatment in Cleveland, Pittsburgh, and WVU. I live in Wheeling, WV for

your information.

I first developed CP last summer and WA extremely ill. In fact my

doctors and husband were sure that I would not survive but I am here

today and doing fairly well. I continue with many GI problems including

a megacolon, awaiting surgery for an ileostomy if the university permits

it. Gastroporesis, GERD, insulin resistance, and the CP. I also have

candida in my gut, lung, and was septic from a central line that I had in

for two years just about four weeks ago. The line grew a candida and my

blood cultures grew a bad fungal infection. Believe you me I was sick.

I could go on and on, I am active with the CF foundation and other CF

affiliates. If you would like to speak with me on the phone here is my

phone number-- . I am usually up at 6 A.M. and down at 12

midnight. My cell is . I do work with my consulting

business so I am not always home but do have an answering machine.

Please get in touch and take care of yourself. Rest, nutrition, pain

relief, pulmonary treatments, exercise, and good mental attitude. My

prayers are for you. Call anytime. Deb