What do you wish people knew about pancreatitis? | Rare Disease Day

[Skye_MC]

This #RareDiseaseDay, bring awareness to chronic pancreatitis and inspire others to help find a cure by showing off your purple stripes! Leading up to #RareDiseaseDay, we'll be posting questions on our social media accounts to help others learn about the disease, starting with the question: What do you wish people knew about pancreatitis? Feel free to answer below for us to share on our Mission: Cure Facebook and Instagram accounts.

Other ways you can join the #MyPurpleStripes challenge can be found here:

mission-cure.org/my-purple-...

1. Show off your purple stripes by posting a picture and your pancreatitis story on Instagram, Facebook, or Twitter, and include #MyPurpleStripes in the caption (don't forget to tag us!).

2. Use the #MyPurpleStripes story filter to answer questions about pancreatitis and educate others on what it means to live with the disease.

3. Join a clinical trial! Currently, a clinical trial testing proglumide for chronic pancreatitis is recruiting and desperately needs you.

4. If the proglumide clinical trial isn't right for you, consider signing up for our email newsletter to stay up-to-date on new clinical trials you can join.

5. Donate to or fundraise for the #MyPurpleStipes challenge! Click "Join the #MyPurpleStripes Challenge" through the link in our bio to learn how.

Together, we can bring an end to pancreatitis. Are you up for the challenge?

[Signingfun]

There are so many things I wish people knew... The top two are:

1. I don't look sick. But managing chronic pancreatitis is difficult and looks are deceiving.

2. I really do have to take all those digestive enzymes with my meals.

[daniel55]

I wish people understood how pancreatitis can affect someone on a daily basis the pain an actual flare up can cause, the smelly bowel movements when you use a public toilet if you haven't got your dose of creon right. remembering to take your creon every time you want to eat something carrying some every time you leave the house having to explain to friends that you have pancreatic insufficiency or you can't go for that coffee with a friend because you've left your creon at home xx

[Bleatherkirky]

I wish I was diagnosed years before so I could have taken the enzymes earlier and not suffered with malnutrition which affected my skin causing reactions to chemicals etc and my nails to lift off. Feeling much better now after 2 years of taking creon and less reactions. I also don't need to be near a toilet all the time now.