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Cystic Fibrosis Related Diabetes and Islet Cell Transplants

Dr. Mark Nicolls is a pulmonologist at the University of Colorado Health Sciences Center whose research interests include lung transplantation and islet transplantation. Mark is leading a study that will examine islet cell transplants in patients with cystic fibrosis-related diabetes (CFRD).

Sara Brayshee is a nurse at the University of Colorado who treats CFRD patients at the University of Colorado Adult Cystic Fibrosis Clinic. Sara is also involved in the CFRD islet transplant study.

Chat Room Administrator chat@childrenwithdiabetes.com Thu Jan 25 2001 19:15:00 Eastern US
The 'CFRD' chat room is now open.


Thu Jan 25 2001 19:51:22 Eastern US
Nicolls/Brayshaw/Pickard (CFRD medical team) from 140.226.120.160
Hello all - I guess we are here 10 minutes early. Do you want to start?

Thu Jan 25 2001 19:54:28 Eastern US
Sonia Cooper (Mom of Matthew, 19, dxd at 1) from 32.102.169.224
Hi, I'm here early too. I just wanted to thank you for providing information on the islet transplant project and for staying late at work tonight.

Thu Jan 25 2001 19:55:09 Eastern US
Brenda Hitchcock (Marissa,13--dx'd 9/89) from 206.112.197.133
Hi. On behalf of the CWD web site, I welcome you. I don't know if anyone will show up to chat for a few more min.

Thu Jan 25 2001 19:55:39 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
No problem

Thu Jan 25 2001 19:56:20 Eastern US
Brenda Hitchcock (Marissa,13--dx'd 9/89) from 206.112.197.133
CFRD team--I suppose I should have looked this one up, but I will pose a question: what percentage of kids with CF develop diabetes?

Thu Jan 25 2001 19:57:30 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
there's a short answer and a long one. give us a second

Thu Jan 25 2001 19:58:42 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
After age 18, 30-40% of all CF patients develop CFRD. It is relatively uncommon in young children.
We have changed the way of diagnosing this disease and are detecting more cases earlier.

Thu Jan 25 2001 19:58:43 Eastern US
Brenda Hitchcock (Marissa,13--dx'd 9/89) from 206.112.197.133
OK. Hi Sonia. Jeff's not here tonight and I have 2 kids with fevers (currently just about normal thanks to Tylenol) who are driving me nuts!

Thu Jan 25 2001 19:59:40 Eastern US
Brenda Hitchcock (Marissa,13--dx'd 9/89) from 206.112.197.133
Well, that's quite a high percentage. Do any of the meds they take for CF cause problems with BGs?

Thu Jan 25 2001 20:00:20 Eastern US
Brenda Hitchcock (Marissa,13--dx'd 9/89) from 206.112.197.133
I've heard that kids with asthma and diabetes often have more control problems because of their asthma meds.

Thu Jan 25 2001 20:00:34 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
More info: CFRD is extremely common in CF especially as they get older. One study found that up to 75% of CF adults have some form of glucose intolerance.

Thu Jan 25 2001 20:01:02 Eastern US
Brenda Hitchcock (Marissa,13--dx'd 9/89) from 206.112.197.133
Is it Type 1 or 2 in adults?

Thu Jan 25 2001 20:01:18 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
Typically on predinsone, glucoses run higher. Prednisone is a common drug for asthma.

Thu Jan 25 2001 20:01:47 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
Mostly type 1 although a certain % of patients have insulin resistance.

Thu Jan 25 2001 20:02:33 Eastern US
Sonia Cooper (Mom of Matthew, 10, dxd at 1) from 32.102.169.224
Hi Brenda, I hope they feel better soon. Dr. Nicolls, I think we are getting close to the time people might be signing on. For the record, can you give some background on your team, where they trained in islet cell research and how this project came about.
Thanks so much!

Thu Jan 25 2001 20:05:20 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
Dr. Mark Nicolls: lung transplant M.D. does research in transplantation immunology. Involved with human islet transplant project at University of Colorado.

Sara Brayshaw: CFRD nurse, coordinator for CFRD islet trial, adult CF clinic nurse coordinator

Connie Pickard: CF research nurse, islet trial and CF genetic counselor

Thu Jan 25 2001 20:06:53 Eastern US
Brenda Hitchcock (Marissa,13--dx'd 9/89) from 206.112.197.133
Are you working at all with Dr. Shapiro and assoc. in Edmonton?

Thu Jan 25 2001 20:07:16 Eastern US
Sonia Cooper (Mom of Matthew, 10, dxd at 1) from 32.102.169.224
Thanks! Connie, is there a genetic tie between Type I autoimmune diabetes and CF. I met a man with CF this week who has two daughters with Type I, but he doesn't have CFRD yet.

Thu Jan 25 2001 20:07:56 Eastern US
Brenda Hitchcock (Marissa,13--dx'd 9/89) from 206.112.197.133
I saw Dr. Shapiro speak in Oct. and almost all the recipients were completely off insulin. Do you know how they are doing now?

Thu Jan 25 2001 20:08:16 Eastern US
Ellen (FL) (Zachary 13, dx'd 2/89, pump 5.5 yrs) from 205.188.200.148
Hello. My friend's daughter has CF and Type 1 diabetes and lives in Israel. She was on dialysis until she received a kidney transplant. The doctors in Israel were unwilling to give her a simultaneous pancreas transplant due to the fragility of her body.

Thu Jan 25 2001 20:08:38 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
Are the children biologically his? 98% of CF men are sterile

Thu Jan 25 2001 20:09:33 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
No known tie between type 1 and CFRD although a very small % have autoantibodies similar to type 1 diabetes

Thu Jan 25 2001 20:09:55 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
all of the edmonton trial folks are still off insulin

Thu Jan 25 2001 20:10:16 Eastern US
Sonia Cooper (Mom of Matthew, 10, dxd at 1) from 32.102.169.224
I didn't ask. This is a very sad statistic though. His CF was very advanced though. He was living with a double lung transplant.

Thu Jan 25 2001 20:10:36 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
Ellen, not surprised. Pancreas transplant is very invasive and exogenous insulin is still effective

Thu Jan 25 2001 20:11:38 Eastern US
Brenda Hitchcock (Marissa,13--dx'd 9/89) from 206.112.197.133
Do you know if they are still transplanting islets into other individuals? I saw where people could "sign up" to participate, but haven't followed through with this information since our daughter is not eligible.

Thu Jan 25 2001 20:11:58 Eastern US
Sonia Cooper (Mom of Matthew, 10, dxd at 1) from 32.102.169.224
How do you think the information from the islet transplants in CFRD patients will advance what we know about islet transplantation in general?

Thu Jan 25 2001 20:12:00 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
Sonia, there are quite a few options for male infertility just so you know in case you are thinking about Matthew's future.

Thu Jan 25 2001 20:13:13 Eastern US
Ellen (FL) (Zachary 13, dx'd 2/89, pump 5.5 yrs) from 205.188.200.148
The question I have is, since she's already taking immunosuppressants, would it be feasible for her to receive islets now?

Thu Jan 25 2001 20:14:24 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
Sonia, the information is key because as a nonautoimmune process, these patients may have a much higher likelihood of success with fewer islet cells. Additionally it is possible that the immunosuppression may slow lung disease.

Pts with CFRD have a significantly higher mortality rate compared with CF patients without diabetes. Additionally there is a direct relationship between the absence of insulin and lung deterioration.

Thu Jan 25 2001 20:15:33 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
Ellen, yes - in the future - currently only those patients that are not transplanted are eligible for these studies. Unfortunately, some of the immunosuppressive drugs like prednisone are very harmful to islet transplants.

Thu Jan 25 2001 20:16:31 Eastern US
Sonia Cooper (Mom of Matthew, 10, dxd at 1) from 32.102.169.224
I have heard that insulin is in itself very therapeutic and can have anti-inflamatory effects. Have there been tests on lung tissue to see if this is true?

Thu Jan 25 2001 20:16:40 Eastern US
Brenda Hitchcock (Marissa,13--dx'd 9/89) from 206.112.197.133
So, are you more involved in islet transplants for CFRD patients only and not those solely with diabetes? I'm trying to understand this: do CFRD patients need the transplants to help make it easier to live with CF? I realize that CF is a very problematic disease.

Thu Jan 25 2001 20:17:53 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
Sonia, Yes, after patients are treated with insulin lung function improves. Whether this reflects improved nutrition, anti-inflammation or both is unknown.

Thu Jan 25 2001 20:18:48 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
The study we are undertaking is to study patients with Type 1 DM and CFRD patients simultaneously. We are looking for different things with each patient group.

Thu Jan 25 2001 20:19:47 Eastern US
Brenda Hitchcock (Marissa,13--dx'd 9/89) from 206.112.197.133
Does your study include children? I am assuming it does not.

Thu Jan 25 2001 20:19:53 Eastern US
Risa (Risagans) from 152.163.195.201
Sorry I am late

Thu Jan 25 2001 20:20:06 Eastern US
Sonia Cooper (Mom of Matthew, 10, dxd at 1) from 32.102.169.224
Sara, can you tell us how many patients you are looking for or if the list is already full? What are the criteria for being on the list?

Thu Jan 25 2001 20:20:40 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
Unfortunately not. Given the risks of immunosuppression, however mild, we are starting with adults. Later - kids.

Thu Jan 25 2001 20:22:31 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
Sonia, simply put the criteria are
1)CFRD not well controlled with insulin
2)mild - moderate lung disease
3) no multiple drug resistant organisms
4) over 18
5) no other systemic disease.

This is brief and does not explain fully.

Thu Jan 25 2001 20:23:32 Eastern US
Sonia Cooper (Mom of Matthew, 10, dxd at 1) from 32.102.169.224
Are you still looking for candidates or is the list full? Are you taking anyone from outside the Denver area?

Thu Jan 25 2001 20:23:39 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
The list, by the way, is not full. A prospective patient should live in Colorado. We will only be transplanting a handful of patients at first.

Thu Jan 25 2001 20:24:00 Eastern US
Brenda Hitchcock (Marissa,13--dx'd 9/89) from 206.112.197.133
Showing my ignorance about CF again: Is it similar to diabetes in that only a lung transplant is the "cure?"

Thu Jan 25 2001 20:24:20 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
As long as you live in the general Rocky Mountain Region - that would be fine.

Thu Jan 25 2001 20:26:15 Eastern US
Brenda Hitchcock (Marissa,13--dx'd 9/89) from 206.112.197.133
We parents of children with diabetes have some interest in the current hot topic: stem cell research. Can stem cells be useful in the search for a cure for CF? I had heard something about gene therapy, but it was inconclusive.

Thu Jan 25 2001 20:26:20 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
Brenda, basically the CFRD has to be so significant and potentially life-altering that the risks of immunosuppression are outweighed by the benefits. Yes, it can be more of a cure than simply taking insulin. A transplant literally normalizes blood sugars at ALL hours of the day rather than a lot of peaks and valleys.

Thu Jan 25 2001 20:26:26 Eastern US
Sonia Cooper (Mom of Matthew, 10, dxd at 1) from 32.102.169.224
After your team gains experience with CFRD patients, do you anticipate enrolling those with just Type I diabetes?

Thu Jan 25 2001 20:28:08 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
Stem cell research is different from gene therapy. Yes, there is early work into generating stem cells which develop into islets and transplanting these. CF gene therapy on the other hand turns out to be more complicated than originally thought. Much research ahead before this is a viable therapy. Same applies to stem cells for islet transplants.

Thu Jan 25 2001 20:28:12 Eastern US
Brenda Hitchcock (Marissa,13--dx'd 9/89) from 206.112.197.133
I may not have phrased my question properly--I understand that a pancreas or islet transplant cures diabetes. Is the only cure for CF a lung transplant?

Thu Jan 25 2001 20:28:39 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
Sonia, we will be enrolling both groups of patients at the same time.

Thu Jan 25 2001 20:28:54 Eastern US
Wendy from 12.89.136.130
Hi Everyone

Thu Jan 25 2001 20:30:17 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
Lung transplantation only cures the lungs but that 's a significant cure - they still have pancreatic malabsorbtion, etc. Islets merely chip away at the global disease. But, don't knock that because this little chipping away has already dramatically extended the life span of CF patients.

Thu Jan 25 2001 20:30:54 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
hi wendy

Thu Jan 25 2001 20:31:46 Eastern US
Wendy from 12.89.136.130
What is the average life span of a person with CF currently?

Thu Jan 25 2001 20:32:06 Eastern US
Brenda Hitchcock (Marissa,13--dx'd 9/89) from 206.112.197.133
So, a CF patient who receives a lung transplant can still develop diabetes because "the damage is done" for lack of a better description.

Thu Jan 25 2001 20:32:26 Eastern US
Sonia Cooper (Mom of Matthew, 10, dx'd at 1) from 32.102.169.224
Would the Type I and the CFRD groups be compared somehow? How could you compare how well the islets are doing in each group?

Thu Jan 25 2001 20:33:02 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
Brenda, was that last answer clear?

Wendy, the latest data says 34. We have a 67 year old in our center and some patient in 40's-50's. So we would expect this number to get older and older every year.

Thu Jan 25 2001 20:33:07 Eastern US
Brenda Hitchcock (Marissa,13--dx'd 9/89) from 206.112.197.133
Sonia, I will let you take over for a while. Time to check on my troops.

Thu Jan 25 2001 20:33:37 Eastern US
Risa (Risagans) from 152.163.195.201
My name is Risa Gans and I am 41 yrs. old. I had a double lung tx five yrs ago and I am doing well. I never developed Diabetes and I believe because I always watched my diet. I am not off prednisone for two and a half yrs. I mentor to all Transplant patients. I advocate a healthy diet one which is void of sugars. I do eat fruit occassionally. This was just some info for those interested.

Thu Jan 25 2001 20:34:15 Eastern US
Risa (Risagans) from 152.163.195.201
I meant to say that I am off predisone for two and a half yrs.

Thu Jan 25 2001 20:34:39 Eastern US
Brenda Hitchcock (Marissa,13--dx'd 9/89) from 206.112.197.133
Risa--that's a partial answer to my question and I am glad to hear you are doing well.

Thu Jan 25 2001 20:34:39 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
Sonia, since CFRD does not involve an autoimmune response there is a greater chance of success. It would be good to talk about this to you in person as it is more complicated than you think.

Thu Jan 25 2001 20:35:21 Eastern US
Wendy from 12.89.136.130
OKay, just wondering, because, my sister tried to tell, me that it was much lower, from my understanding CFRD usually gets those whose digestion is affected by the CF right.....the little girl i know...has slight lung involvement but think its worse on her Digestive system

Thu Jan 25 2001 20:35:25 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
Brenda, CFRD can develop regardless of the status of lung transplantation

Thu Jan 25 2001 20:36:01 Eastern US
Risa (Risagans) from 152.163.195.201
I heard about this chat and I just wanted to stop by and say hello. Thank you for your reply

Thu Jan 25 2001 20:37:09 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
Risa, we are glad you are doing so well. A healthy diet is great - however with CF (with or without diabetes) one of the challenges is to have our patients getting enough calories throughout the day. We never limit carbohydrates or sugars in diet. We do carb counting with insulin

Thu Jan 25 2001 20:38:07 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
Wendy, yes CFRD is correlated with the severity of digestive problems

Thu Jan 25 2001 20:38:25 Eastern US
Sonia Cooper (Mom of Matthew, 10, dx'd at 1) from 32.102.169.224
Risa, this is very helpful. I'm glad you are doing well. I hope that this islet transplant project will bring hope to people who are having difficulty managing their diabetes with diet.

Thu Jan 25 2001 20:38:46 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
have we missed any questions yet?

Thu Jan 25 2001 20:38:53 Eastern US
Risa (Risagans) from 152.163.195.201
I agree but I have found that when you eat many different types of healthier foods you can avoid problems like yeast infections, hypoglycemia and possible delay the onset of diabetes from sugar etc..

Thu Jan 25 2001 20:39:10 Eastern US
Wendy from 12.89.136.130
Okay, this mother told me her daughter was at fairly high risk for the Diabetes...but so far so good......

Thu Jan 25 2001 20:41:30 Eastern US
Sonia Cooper (Mom of Matthew, 10, dx'd at 1) from 32.102.169.224
If one of the major obstacles to islet transplantation is autoimmunity, I always wondered how the islets would do in a Type II diabetic? You mentioned some CF patients do have autoimmunity though. Do you think it will disappear with the transplant? Are these the same autoantibodies tested in Type I?

Thu Jan 25 2001 20:42:04 Eastern US
Risa (Risagans) from 152.163.195.201
There are too many people with CF who eat too much of the wrong fats instead of essential fatty acids and too much of refined sugars instead of complex carbohydrates. That is what I mean about taking better care of your body with a proper nutritional intake of food. You can increase caloric intake with a healthier diet.

Thu Jan 25 2001 20:44:30 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
Sonia, good question. With insulin resistance (Type II) the presence of insulin would not be enough. We expect that some autoimmunity is controlled by the trial drugs - and yes we look for the same antibodies in both groups. Would exclude CFRD with autoantibodies at this point be cause we really want the graft to succeed as we start the trial. Bear in mind that this will be the very 1st time this is done in the world.

Thu Jan 25 2001 20:44:36 Eastern US
Sonia Cooper (Mom of Matthew, 10, dx'd at 1) from 32.102.169.224
About 90% of people with Type I have elevated prostaglandin (PGS2) levels. Is this also true in CFRD?

Thu Jan 25 2001 20:45:14 Eastern US
Daniel / FL (Pump User) from 65.32.152.250
CFRD?

Thu Jan 25 2001 20:45:43 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
Risa, we agree with you that a healthy diet is ideal. However, some of our patients are picky or not hungry and we don't want to limit the calories that they can get. Agree with a healthy diet.

Thu Jan 25 2001 20:46:11 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
Sonia, don't believe this has been looked at.

Thu Jan 25 2001 20:46:21 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
Hi Daniel, yes CFRD

Thu Jan 25 2001 20:46:41 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
CFRD= cystic fibrosis related diabetes

Thu Jan 25 2001 20:47:07 Eastern US
Daniel / FL (Pump User) from 65.32.152.250
thank you :-)

Thu Jan 25 2001 20:47:56 Eastern US
amy from 209.240.220.194
hello everyone

Thu Jan 25 2001 20:48:04 Eastern US
Risa (Risagans) from 152.163.195.201
Thank you. I do believe that parents need to be aware of this and to try and discourage their children to eat healthier. I do think there needs to be more education from the doctors to the patients and to the parents how a healthier diet will help to prevent infections etc.. I do agree with your statement but behavior modification can be taught. Parents need to teach their children and we need to teach the parents.

Thu Jan 25 2001 20:48:21 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
hi amy

Thu Jan 25 2001 20:48:49 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
Risa, thanks

Thu Jan 25 2001 20:49:28 Eastern US
Risa (Risagans) from 152.163.195.201
I am happy that there is hope for others who are dealing with diabetes.

Thu Jan 25 2001 20:49:43 Eastern US
Sonia Cooper (Mom of Matthew, 10, dx'd at 1) from 32.102.169.224
Hi Amy,
Risa's diet ideas made me think of the high prostaglandins found in Type I diabetics because EPA/EFA can be used as a PGS2 suppressor, and it seems like the inflamation from high prostaglandins would make it harder for islets to survive.

Thu Jan 25 2001 20:52:38 Eastern US
Risa (Risagans) from 152.163.195.201
I do believe that there is going to be more research in years to come on how important it is to eat healthy. A healthy food intake will help to nourish the body and prevent the onset of many different diseases.

Thu Jan 25 2001 20:53:28 Eastern US
Sonia Cooper (Mom of Matthew, 10, dx'd at 1) from 32.102.169.224
How old are most people when diagnosed with CF? How do the families deal with living with the disease?

Thu Jan 25 2001 20:53:48 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
We planned to use pretty powerful anti-inflammatory therapy in the upcoming islet trial. These include novel antibody therapies and anti-oxidants.

Thu Jan 25 2001 20:54:20 Eastern US
amy from 209.240.220.162
So is infections linked to not eating healthy?

Thu Jan 25 2001 20:54:53 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
Sonia, Do you mean CF or CFRD?

Thu Jan 25 2001 20:56:32 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
Amy, the most crucial aspect of preventing infection with relation to nutrition is adequate calorie intake. First and foremost, prevention of malnutrition is KEY to preventing infection. Also, lung clearance techniques, antibiotics when needed, treating the whole patient.

Thu Jan 25 2001 20:56:58 Eastern US
Risa (risagans) from 152.163.195.201
For me, If I eat too much of milk, sugar I notice that my sinuses fill up with thick mucus. I had a transplant but that does not mean I do not have CF anymore. I have done experiments with myself on many occassions with avoiding allergic foods like soy, dairy, sugar and wheat. A dramatic difference in reduction of mucus.

Thu Jan 25 2001 20:57:03 Eastern US
Sonia Cooper (Mom of Matthew, 10, dx'd at 1) from 32.102.169.224
Actually just CF. I'm still learning more about it, and was wondering how young some of these kids are.
Your antioxidant/anti inflamation cocktail sounds great? What is your secret recipe? Vitamin E? C?

Thu Jan 25 2001 20:59:34 Eastern US
amy from 209.240.220.162
If U don't eat right that could be linked to having a low immune system?

Thu Jan 25 2001 21:00:05 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
Sonia,
In Colorado, we have been doing newborn screening for 12-15 years on every newborn which detects 95% kids. So to answer your question CF can be diagnosed at birth.

We are looking at novel compounds with names that might not mean much to you like manganese superoxide dismutase mimetics, and IL-1 receptor antagonists. Fat soluble vitamins (A,D,E,K), by the way, are extremely important in general for CF

Thu Jan 25 2001 21:00:19 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
Amy, absolutely

Thu Jan 25 2001 21:01:04 Eastern US
Risa (risagans) from 152.163.195.201
I need to go and eat a healthy meal. If you know of anybody who would like to talk with someone who had a successful transplant please tell them about www.transplantbuddies.com AND email RisaGans@cs.com

Thank you for all the valuable information bye :)

Thu Jan 25 2001 21:01:14 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
Any last questions for us?

Thu Jan 25 2001 21:01:31 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
bye risa

Thu Jan 25 2001 21:01:36 Eastern US
amy from 209.240.220.162
Well I guess that explains why I was so sick last year

Thu Jan 25 2001 21:02:17 Eastern US
Sonia Cooper (Mom of Matthew, 10, dx'd at 1) from 32.102.169.224
I just wanted to thank you! It will be so exciting to have an islet transplantation center in Colorado. Are you part of the Immunology Center of Excellence award or is this study just being supported by the CF foundation?

Thu Jan 25 2001 21:03:24 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
This study will likely be funded jointly by the Cystic Fibrosis Foundation and the Juvenile Diabetes Foundation. Thanks for having us!

Thu Jan 25 2001 21:04:03 Eastern US
Brenda Hitchcock (Marissa,13--dx'd 9/89) from 206.112.197.133
Thank you very much for taking the time to answer our questions and share information.

Thu Jan 25 2001 21:04:40 Eastern US
Nicolls/Brayshaw/Pickard (CFRD) from 140.226.120.160
Our pleasure. Good night.

Thu Jan 25 2001 21:05:14 Eastern US
joyce (Liz,16,dx'd 2/00 pump 10/00) from 64.12.103.37
Hi
Have a friend with CF&D. She just got a pump and is having trouble with the set coming out because of her vest. Any suggestions?

Thu Jan 25 2001 21:05:24 Eastern US
Sonia Cooper (Mom of Matthew, 10, dx'd at 1) from 32.102.169.224
Thank YOU so much!
Good night.
Sonia

Thu Jan 25 2001 21:06:24 Eastern US
joyce (Liz,16,dx'd 2/00 pump 10/00) from 64.12.103.37
Do you have any web sites for her to look at? I know she would appreciate knowing.

Thu Jan 25 2001 21:08:36 Eastern US
Sonia Cooper (Mom of Matthew, 10, dx'd at 1) from 32.102.169.224
Joyce, We haven't found a site for people with CFRD, but Jeff Hitchcock has offered to set one up. Can you have your friend contact him at ***
Much of the pump site information can be found on this site, but it seems like there is a need for a CFRD section, and if she would like to help with this, it would be wonderful.



                 
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