Hello! My adult daughter Amy was diagnosed with chronic pancreatitis after many years of misdiagnosis. Frustrated by the lack of knowledge, research and development in pancreatitis, I joined Mission: Cure in late 2017, as co-director with Megan Golden, soon after Mission: Cure was launched. Our aim is to find effective treatments and improve care for children and adults suffering from pancreatitis.
I now lead our impact investment company, Mission Cure Capital, and continue to support Mission: Cure as board chair.
I look forward to getting to know you!
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Linda_MC
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I’m really sorry to hear your daughter was diagnosed with pancreatitis! Do you mind me asking how old she was? …
By the way, I’m Dee…from the U.K. I’m 42 and was diagnosed with pancreatitis aged 19. It took them a while and then my consultant flew to Japan for me and I was one of the first to be diagnosed with autoimmune chronic pancreatitis. Over the years they have figured out more about IgG4 stuff and have decided my pancreatitis is caused by this…I am also now an insulin dependent diabetic with my own IgG4 diabetes 🤦♀️ and also have chronic kidney disease caused by the same thing! I have severe asthma too but they don’t seem to think that’s an IgG4 thing!
There aren’t too many of us in the world…my consultant has only recently come across one other. When first diagnosed I was one of 100 in the world but gradually they’re figuring it out slightly more so I guess there’s a few more around.
IgG4 disease is often treated with prednisone which can be quite a successful treatment, however I react very severely mentally to steroids so am treated with Rituximab infusions. They seem to be keeping things at bay for the time being.
From a pancreas point of view, my pancreas is basically a dead organ now and relatively speaking, my kidneys and asthma cause me more problems, other than the diabetes which is a nightmare, especially when I need short term pred for my asthma 🤦♀️ The thing I find hardest is that I could eat exactly the same thing two days in a row, and one day my glucose levels could be fine and in range and the next day crazy high!
Sorry for my long post!
One other thing…my consultant thinks I might have had pancreatitis since 12 years old!? …which of course would be even more rare!
Please ask anything and it will be great getting to know you more!
Welcome, Linda. I'm sorry to hear about your daughter's experience. The frustration of dr.s not having the needed education on the disease has been tough on us all. I'm so glad to know there are groups like Mission: Cure to help bring this disease and all its complications into the 21st century.
I've had chronic pancreatitis since I was 24, I'm now 60. Two of my uncles passed from pancreatitis and I have a niece and nephew who were both diagnosed before they were teenagers.
I look forward to getting to know you better and sharing whatever is needed to help you achieve your goals. ♥
Hi Karen, thanks for the welcome. I'm sorry to hear about you and your family's experience with pancreatitis-wow, that's a lot. I joined Mission: Cure to help advance the science, research and development in the hopes that others like you and my daughter won't have to suffer. I truly believe that there is hope on the horizon and that together we will find effective treatments one day soon.
Goodness Karen, sorry to hear about so many of your family members having/had pancreatitis! Hereditary?? That’s a lot of pancreatitis within one family! Do any of them have cystic fibrosis? …The reason I ask is because they think I might have had pancreatitis since age 12 and sent my blood to leading teaching hospitals in the U.K. and I think my results got sent somewhere to the US years ago and I was involved in research about pancreatitis and cystic fibrosis. Thankfully I don’t have cystic fibrosis but they tested to see if I was a carrier. I’m not sure of the link between it but know it can be linked somehow.
I really hope in the future there can be better treatment…the pain is so significant…I remember it well and really feel for anyone else who has to deal with it!
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Brother in hospital with acute alcoholic pancreatitis- seeking advice for what will happen next and interested to hear others' experience
📣 Discussion Topic: How did you learn more about your pancreatitis diagnosis?
