Hello from Megan from Mission: Cure

[Megan_MC]

Hi! My name is Megan. I co-founded the nonprofit Mission: Cure with my brother, Eric, after he was diagnosed with chronic pancreatitis. We were frustrated that there was no real treatment for the disease and that it was very hard to find competent medical care. Mission: Cure now has a small staff of 3 (you'll meet the others) and is working to develop treatments and improve care. We have top pancreatitis experts as advisors and share expert information on chronic and recurrent acute pancreatitis on our website. I am looking forward to getting to know the members of this community!

[madonbrew Pioneer]

Hi Megan,Nice to meet you! That sounds great what you are doing!

I have a rare autoimmune disease called IgG4 RD that has caused my pancreatitis…now had it for 23 years (was 19 when I first got sick) and my pancreas is pretty much a dead organ now. I’m insulin dependent diabetic although amazingly somehow at the moment am managing without creon but probably need a chat with my consultant on that one. I also have chronic kidney disease (also an IgG4 disease) and severe asthma .

It will be good getting to know you more.

Have a good day!

Dee 🌺

[Megan_MC Partner in reply to madonbrew]

Nice to meet you, Dee. I think IgG4 disease is probably under diagnosed. How were you diagnosed, if you are comfortable sharing? Thanks for being part of this community.

[madonbrew Pioneer in reply to Megan_MC]

Hi Megan, yes, it might well be! I think it’s becoming more heard of these days so gradually getting more diagnosed.

Here’s my story…it might be a slightly long reply:

I was a student nurse and during my summer placement realised I had a dodgy tummy for a fortnight. Due to holiday it was 8 weeks before I saw my gp so I’d had diarrhoea and lost 21lbs in that time. At first my liver was functioning really badly but to look at seemed fine. I had bloods galore and they couldn’t figure the cause. A few months later I had a liver biopsy and ended up in hospital the following week with pancreatitis. My bile ducts were enlarged and blocked and my gallbladder wasn’t functioning at all and had been chronically inflamed. They couldn’t work out what was causing it all.

They put stents in my bile ducts and treated my pancreatitis with steroids.

The following year they removed my gallbladder and stents ad they weren’t helping.

About year 2000/2002 my consultant went to Japan for me and it was basically when they were coming up with the criteria for autoimmune chronic pancreatitis. That’s how I got diagnosed with that.

Gradually as time passed my consultant became aware of the IgG4 subclass and did bloods and my IgG4 level was 10. I also had a billion scans done and a pancreas biopsy and between all of those things they figured I had IgG4 RD. At first they treated me with steroids but I react very severely to them mentally so now I’m treated with Rituximab infusions which seem to be basically keeping thing at bay. My IgG4 level is down within normal range.

I also have chronic kidney disease…eGFR of 33 which they also think is an IgG4 disease. I have severe asthma but a CT scan shows that it doesn’t seem like my lungs are so far affected by IgG4.

So basically that’s it! Other than I also have my own IgG4 type of diabetes 🤦‍♀️

[KarenB12 Ambassador]

Hi, Megan. I haven't even experienced it yet and I'm grateful for Mission: Cure. I'm sorry you and your brother had to go through the experience, but what you're giving back is priceless. 😘