Following is an e-mail that I sent to Dr. David C Whitcomb, Professor of Medicine, Cell Biology & Molecular Physiology, and Human Genetics at University of Pittsburg. His professional career has focused on understanding the origin and nature of pancreatic diseases for the purpose of providing effective preventative and therapeutic interventions. I am hoping for a prompt response.
Dear Dr. Whitcomb,
I just finished listening to your presentation on the mission cure website about genetics and pancreatitis. It was an excellent presentation and very insightful. I cannot thank you enough for your dedication to this field and your enthusiasm for changing the history of this horrible disease process.
My husband, Larry started having recurring acute pancreatitis in 2013 at age 47. To date he has had 34 hospital stays and 49 documented attacks (does not account for all of the mini attacks). After about a year and a half of being what we thought was attack free, he started having what we thought were GI problems last September, which eventually resulted in a complete inability to eat or drink and a 40 lb. weight loss.
When he first started having the symptoms last September he went in for a colonoscopy and everything checked out to be ok. I had to convince him to go to the ER a few months later when he was still struggling and his enzymes were a little bit elevated and they indicated that on the CT scan his pancreas looked a little inflammed, but nothing alarming. FINALLY at the beginning of January we ended up in the ER again when he couldn't keep anything down, had lost so much weight, and was throwing up and in constant pain. At this visit the ER doctors were very alarmed at his pancreas on the CT scans and said that it looked like it had been run over by a freight train. Other doctors that have reviewed these scans have described the image of his pancreas as looking like somebody had ripped it out, thrown it on the sidewalk, and beat it over and over again with a baseball bat.
For the first time since this whole process had started, Larry was put on an NJ tube and a couple of weeks later he had a stent placed in his pancreas because his pancreatic duct had completely dissolved. He has also currently on blood thinners, and spent a good month on 24 hr. high doses of antibiotics through a pic line due to his high risk for infections. The stent was placed on January 21st and since that time he has still only been able to eat very soft foods, such as pudding or soup, and he is not even able to eat all of those all of the time. Thankfully, even though he has learned to absolutely hate the NJ tube, he is usually able to tolerate the feedings.
On March 9th Larry had a repeat of the CT scan and met with Dr. Braden his gastroenterologist. Dr. Braden said the pancreas is healing, but it seems to be much slower than he would like. Last week we were also FINALLY able to meet with a genetic counselor and Larry's genetic testing was sent to the lab last Monday, March 13th which we are all anxiously awaiting the results for, especially because his paternal grandmother died an incredibly painful death of pancreatic cancer at the young age of 49. It is my understanding that she started having stomach pains at the age of 48 in March and she essentially starved to death for 1 1/2 years and passed away in December of the following year at 65 pounds.
All facts would indicate that Larry's pancreatitis started because of a toxic mold exposure that our family had. In 2012 we moved to a new house in November and by February of 2013 our family started having some very severe health problems--pancreatitis, Bell's palsy, asthma, chronic coughs, and my 13 year old son, Spencer, was diagnosed with Type 1 diabetes. All of these symptoms came on in a very short amount of time and once we left the environment we stopped having the intense health problems minus the pancreatic damage that had been done in my husband and son. We ended up going to Dr. Hope, MD in Santa Barbara, CA who specializes in environmental toxicity. ALL of our urine was positive for tricothecenes (some of the most deadly mycotoxins in existence) which I suspect was the culprit behind all of our problems.
In regards to my son, Spencer, he has mostly done an amazing job at managing his Type 1 diabetes. I know few people who are as disciplined at healthy eating and determined to have optimal health. Having Type 1 and his frustration with the lack of good information (specifically nutrition) has motivated him to become a doctor and he is currently in his 2nd year of his Undergraduate studies in Nutritional Science at BYU. My heart is absolutely broken, however, as I continue to watch him battle for good health on a daily basis despite his incredibly good health habits and lifestyle.
In the Summer of 2017 he served an LDS mission in Washington state. The first year his health was relatively good, but the second year of his mission something changed and he started having health problems that included headaches, stomach pains, malaborption, brain fog, and weight loss. They tried to diagnose him with depression, but we were both convinced it was more than that. Amazingly, he muddled through his mission and crawled to the finish line. During this time period he tried several supplements, was treated for hp palori, and adopted a gluten-free lifestyle. Looking back I suspect that he had possibly started having pancreatitis.
A few weeks ago I finally convinced him to go to the ER and get checked out when he had been unable to eat and drink for a few days and was having stomach pains. Because his enzyme levels came back normal they treated him for dehydration and sent him home. Unfortunately, this experience just solidified in Spencer's mind that the doctors are not going to be able to help him.
As Larry and I are the parents of seven amazing children (ages 7-23), three of whom have also been diagnosed with a rare genetic disease, ataxia-telangiectasia (A-T), we need our husband and father! I am writing you out of sheer desperation that you might be able to offer me some insights and direction as to where to go from here.
As a caretaker of all of these people, I am exhausted, tired, and I could really use some expert advice. I have spent countless hours and sleepless nights doing research, contacting experts in various fields, trying to keep the bills paid, making and going to doctors appointments, and negotiating with insurance companies. Any insight or direction that you could give to me would be so greatly appreciated. Thank you for your time.
Sincerely,
Jill Ward
P.S. One other thought in regards to three of my children have A-T. This disease is caused by two recessive ATM genes. As Larry is one of the parents it is pretty much a given that he carries the ATM gene. The ATM gene is know for high rates of pancreatic and breast cancer in people that carry it. Is it possible that his pancreatitis could have been triggered because of this gene?
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