COLOR IT PURPLE FOR PANCREAS DISEASE!
July is here! The National Pancreas Foundation's 4th annual Colors It Purple Challenge/Competition is underway, the annual challenge to raise awareness and encourage involvement in the fight to find a cure for pancreas disease. We encourage everyone to take the challenge and challenge friends, family and work colleagues to Color It Purple and post your picture on the Facebook group,  Annual Color It Purple .
"Color it purple means to me, recognizing the strength, courage, and fearlessness of all those affected by pancreatic diseases!" - Attie Jamison

A special thanks to Attie, a pediatric pancreatitis warrior, for creating the video.
Learn more about Attie through her story and video .
Join in on the fun! To purchase a Color it Purple T-Shirt click here .

All funds raised will go directly to The National Pancreas Foundation.
Get ready and Light It Up Purple for the Pancreas! The NPF is asking that you turn your porch lights purple for the month of July. For easy access, click here and purchase your bulbs Please give the remaining bulbs to your family and friends and ask them to participate. Together, let's shine some light on pancreas disease!

Q&A WITH CAROLYN BLOOM
At 72, Ms. Bloom was told she is one of the oldest survivors of TPIAT Surgery.  

When did symptoms begin? From the age of zero to 22, I was told I had the stomach flu, and that I was nervous. Also, in college was told I had an ulcer and was put on Valium. In elementary school, I would get terrible stomach pain, so the nurse would call my mother to take me home.

What would be your one message to yourself as a child suffering un-diagnosed and misdiagnosed? It's real. It's not in your head. You're not crazy. You and your parents must keep looking until you find an answer.

When were you diagnosed? At 22, I was diagnosed with pancreatitis in Boston at Beth Israel Hospital. (In 1998 they discovered that I also had pancreas divisum).
  
How did pancreatitis affect your career? After college, I had a wonderful career as a professional singer, performing opera, classical duets, and I sang with a night club act. I would have to be hospitalized for acute attacks, and this was hard on my career. I could have been much more successful had it not been for my illness. My second career was in public relations, and I was hospitalized numerous times. I had a very successful 18-year career until I became chronic at the age of 50 due to a stent that slipped and caused further damage to my pancreas. Life stopped, and I had to go on disability as the hospitalizations were so frequent and the pain so bad.

Briefly describe your pancreatitis journey? From 1996 to 2008, I was in the hospital 250 times. I had 62 ERCPs. They told me I couldn't have any more ERCPs, and there was no more pain medicine. I found the hotline, a yahoo group at the time, called the pancreatitis hotline. There, I was able to find information about the TPIAT and found support. Then I heard about the one place in the country that did the TPIAT. In 2008, I had it, and it was my only choice, even though every institution poo-pooed it (at the time). They said, "you shouldn't do it. It's experimental, and you'll become a diabetic,", which I am. Who cares? I am here now 12 years later. I was told that I and one other person, are the oldest living survivors of the TPIAT. 
 
What would be your one message to doctors? Don't tell patients they are nervous, depressed, and should go to therapy. Pancreatic pain is like no other, excruciating. Listen to your patients and be more compassionate. If you can't find the answer, find someone who can.
  
What would you like the pancreatitis community to know? Don't let anyone say it's in your head. Get as many opinions until you find the correct answer. I recommend the University of Minnesota. 

The NPF runs the Color it Purple campaign for awareness in July, why is bringing awareness to pancreas disease necessary? Everyone has heard of pancreatic cancer, but most people do not know what pancreatitis is, its pain, and how it can ruin your life as it did mine for much of my life. 

What good books, movies, or TV shows would you recommend as much of the nation is still hunkering down at home? I have been a movie fanatic all my life. I just watched two excellent Argentinian movies, The Official Story and The Secret in Their Eyes . I also like Bette Davis, Greer Garson, and Ingrid Bergman movies (yes, I'm old school). I watch National Theatre Live productions from London and enjoy listening to Broadway, opera, and classical music. My favorite book is Cutting For Stone. I am now reading American Dirt and Becoming by Michelle Obama.

"I am fortunate to be alive thanks to the University of Minnesota, the compassion and skill of my now-retired surgeon Dr. David Sutherland. He said he never met anyone who had suffered as long as I did."
-Carolyn Bloom
Education and advocacy are part of the National Pancreas Foundation's (NPF) mission. Please see the list of events that are coming up throughout the year. We hope you are able to join us! For a complete list, please see our Events Page .
PATIENT EDUCATION EVENTS
(Due to COVID-19 precautions, in-person events are being rescheduled; however, the NPF calls on its friends and supporters to explore virtual activities they can undertake to help raise funds for our mission. )

  • Senior Health Fair | Fort Wayne IN, September 17, 2020
  • Indiana Chapter Education Event | October 2020*
  • Michigan Chapter Education Event | Oct. 17th, 2020*

*Save the date! More details to follow.
SUPPORT GROUPS
(Due to COVID-19 precautions, in-person support groups are put on hold. Please click on the Chapter links for updates)


If you would like to establish a support group in your city, please contact info@pancreasfoundation.org.
CHAPTER & NPF EVENTS

  • Virtual Run or Pancreatitis Pup Strut | IN Chapter Virtual Event | September 1-30, 2020 | More information to follow
  • Marine Corps Marathon and 10K | Virtual | October 25, 2020
Amid COVID-19, the 2020 Marine Corps Marathon (MCM) Weekend now only consists of the Marathon. The NPF has decided to transfer it's Charity Partnership for 2020 to 2021 to ensure that everyone will be able to run together (in-person). Team Pancreas is now a virtual team! You can sign up for the marathon ($45) or the 10K ($33). Once you register and sign up, please notify National Program Director, Sokphal Tun at stun@pancreasfoundation.org. We will add your picture to the 2020 Team Pancreas site. Registrants who raise at least $250 will get a Team Pancreas shirt and pre-race goodie bag along with their MCM swag.
Please visit the MCM page for more information on their virtual events.  

*Save the date! More details to follow.
AFRICAN AMERICANS & PANCREATIC CANCER

Tossapol Kerdsirichairat, MD discusses pancreatic cancer and the disparities in the Africa n American Community. Tossapol Kerdsirichairat, MD is a Gastroenterologist, Clinical Associate Professor of Medicine, Co-director of Geisinger's Pancreas Program, and the Program Di rector of Geisinger Health System's certified Pancreatic Cancer NPF Center program.  
2020 REGIONAL GRANT RESEARCH PROGRAM

The Western Pennsylvania Chapter of the National Pancreas Foundation is pleased to announce the availability of (1) one year grant of up to $35,000 for the support of research performed in Western Pennsylvania and relating to diseases of the pancreas. The research must be performed at an institution in Western Pennsylvania and pertain to pancreatic neoplasms, acute or chronic pancreatitis, or pancreatic diseases in children. The research may focus on basic science and clinical research in nutrition, pain management, and quality of life. Proposals to develop public education and patient or family support programs are also encouraged.

Click here for more information.
MICHAEL’S STORY – A CAREGIVER AND PATIENT PERSPECTIVE

Michael*, 16, was just 3-years-old when he was diagnosed with pancreatitis. Michael and his Mom share his pancreatitis story through the lens of a patient and caregiver.

How old was your son when he was diagnosed? What were the initial symptoms? Michael was 3-years-old. He had no fever, threw up and had been feeling ill for several days. When we could not control his pain with Children’s Tylenol or Advil, my husband (a physician) thought we should have labs done to make sure his amylase and lipase levels were within the normal range just to rule out pancreatitis. We were shocked and horrified to see the results confirm Michael did have pancreatitis. Receiving this diagnosis helped explain so much of Michael’s behavior since birth, however, it was sad for us to realize that he had been suffering with the pain due to pancreatitis since birth and we did not know.
Did the doctors initially tell you it was pancreatitis? No, in fact he was diagnosed with colic as a baby when he cried constantly, and then as a toddler before he could verbalize his pain, he was diagnosed with strep, the stomach flu or food poisoning. It was only when Michael could describe his pain, that my husband got the idea that he should be tested for pancreatitis. The pediatricians were very accommodating and agreed to our request but did not initially think to test for this or suspect pancreatitis as a possible cause of Michael’s discomfort, which is entirely reasonable since pancreatitis in children is extremely rare.

Pancreatitis is still not well known, even among the medical community. What are some questions that doctors have asked you that reflect this? Someone asked my husband, “How long has your son been an alcoholic?”

How has Michael’s life been different? What are some adjustments that he has had to make due to pancreatitis? When Michael was younger, pancreatitis dominated his life. He had frequent episodes that required hospitalizations and at that time it was recommended that patients not eat or drink anything during an episode (this protocol has changed). Much of his childhood, we remember managing his diet and having to explain to preschool and early elementary school teachers and parents at every back to school night that Michael’s pancreatitis was not contagious and he posed no risk to his teachers or his classmates. We always offered copies of the NPF patient education materials and sent a link to the NPF animated pancreas patient video for teachers and parents to learn more about the disease.

To read more, please  CLICK HERE.
*Not his real name
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