Don’t Sit Up is a patient-led initiative created to support, educate and connect people affected by pancreatitis and pancreatic illness.

It was founded by Ray E Snow following his own experience of severe acute pancreatitis and subsequent chronic pancreatitis. What began with Ray sharing his experience and mentoring others has now developed into an international community, co-founded with Erin Dalke in Arizona, USA.

Our aim is simple: to help people feel better informed, better supported and less alone throughout their journey.

Ray E Snow is based in the UK and is the founder of Don’t Sit Up. Following severe acute pancreatitis in 2019, Ray went on to write Don’t Sit Up and has personally mentored around 75 people worldwide.

Erin Dalke is based in Arizona, USA. Erin also lives with chronic pancreatitis and originally met Ray through mentoring. Their friendship developed across the Atlantic and they now work together as co-founders of the Pancreatitis Global Community.

No. Don’t Sit Up is a patient-led education and support community.

We share lived experience, educational information and practical resources, but we do not diagnose conditions, prescribe treatment or replace professional medical advice.

If you are concerned about your symptoms or health, you should always speak to an appropriate healthcare professional.

It is an international online community for people affected by pancreatitis and related pancreatic conditions.

Rather than simply providing another social-media group, we are building a dedicated environment combining education, peer support, lived experience, community discussions, online events and practical resources.

The community is designed primarily for people living with or recovering from pancreatitis and pancreatic illness.

We also recognise that these conditions affect partners, carers and families enormously, so relevant family members and carers may also benefit from the community.

No. The community is international.

Ray is based in the UK and Erin is based in Arizona, USA, and our aim is to connect and support people around the world.

Membership gives you access to the Don’t Sit Up Community Hub and its growing collection of services and resources, including educational content and videos, community messaging and discussions, member resources, newsletters, online Zoom sessions, guest speakers and community events.

New features and resources will continue to be added as the community grows.

Membership is $9.99 per calendar month.

Your subscription continues monthly until you choose to cancel.

Yes. There is no requirement to remain a member for a fixed period.

You can cancel your subscription at any time through the available cancellation options on the website or by contacting us.

Once you have joined, create an account at dontsitup.com using the same email address you used for your membership.

Please allow up to 24 hours for your Community Hub access to be activated.

Once activated, log into the website and you'll be able to access the members-only area.

We may need to verify and activate your membership before access is granted.

This helps us protect the community and ensures that access is provided to current members.

Please allow up to 24 hours. If you still cannot access the Hub after that time, contact us and we'll help.

Telegram is the messaging platform we use for parts of our community communication.

It allows members to communicate through dedicated community groups without relying solely on Facebook, WhatsApp or conventional social-media platforms.

Telegram is available for Apple and Android devices and can also be used on a computer.

Absolutely not!

We've deliberately tried to make everything as straightforward as possible. Instructions, pictures and video guidance will be available to help you through the setup process.

And if technology decides to have one of its little tantrums, contact us. We'll help you get sorted. 😉

Yes. Asking questions, sharing experiences and learning from others are important parts of the community.

However, members should remember that another person's experience may not be medically appropriate for them.

We encourage discussion and sharing, but individual medical decisions should always be discussed with an appropriate healthcare professional.

Absolutely.

Pancreatitis isn't simply a physical condition. Pain, hospital admissions, dietary uncertainty, fear of another attack and changes to everyday life can have a significant emotional impact.

We want the community to be somewhere people can talk openly about the reality of living with pancreatic illness without feeling judged.

Yes. Pancreatitis often affects an entire family rather than only the person diagnosed.

Partners, carers and family members can play an enormously important role, and some of our information and discussions will specifically recognise their experiences too.

Yes. We hold online community sessions using Zoom, hosted by Ray and Erin.

These provide an opportunity to discuss relevant subjects, hear from others and, where appropriate, welcome guest speakers with specialist knowledge or experience.

Details of upcoming sessions will be published within the Community Hub.

Where a session is going to be recorded, participants will be informed.

Some educational or guest-speaker content may subsequently be made available within the Community Hub where appropriate.

No.

Neither Don’t Sit Up nor the Pancreatitis Global Community should be used to obtain a diagnosis or replace appropriate medical assessment.

Do not wait for a response from the community.

Seek urgent medical assistance through the appropriate emergency medical service where you live.

In the UK, this may mean calling 999 or attending an Emergency Department where appropriate.

Members can discuss their own experiences, but nobody should instruct another member to start, stop or alter prescribed medication or treatment.

Treatment decisions belong between you and your qualified healthcare professionals.

We aim to use reputable sources and distinguish educational information from personal experience.

However, medicine changes, individual circumstances differ, and no website or patient community can guarantee that general information is appropriate for every individual.

Where possible, we encourage members to discuss information that may affect their care with their own medical team.

Member areas are restricted to authorised members, but no internet-based service can guarantee absolute privacy.

We ask members to respect one another's confidentiality and not copy, screenshot, publish or distribute another member's personal story or information without their permission.

We only collect and process information required to operate your membership, communicate with you and provide the services you've requested, together with information you choose to provide.

Personal information is handled in accordance with our Privacy Policy and applicable data-protection requirements.

No. We do not sell members' personal information to third parties.

We want Don’t Sit Up to be supportive, friendly and safe.

Different opinions and experiences are welcome. Personal attacks, bullying, harassment, discrimination, threatening behaviour, deliberate misinformation or targeting another member are not.

And yes — someone saying “I'm in fucking agony today” is rather different from somebody directing abuse at another member. Context matters. 😉

We reserve the right to moderate content and, where necessary, restrict or remove access to protect other members and the community.

Serious or repeated breaches of our community standards may result in membership being terminated.

Access to membership services may be suspended if your subscription lapses.

Your account can remain dormant for up to 60 days, giving you an opportunity to reactivate your membership without unnecessarily starting everything again.

Use the password-reset option on the Don’t Sit Up login page.

If you continue to experience problems, contact us and we'll help.

Yes. Please keep your details up to date so we can communicate with you and correctly identify your membership.

The Don’t Sit Up book is a separate product and is not included as part of the monthly community subscription unless a particular promotion specifically states otherwise.

They are connected through the Don’t Sit Up mission and brand, but they are separate offerings.

The book tells Ray's story and was the catalyst for much of what followed. The community is an ongoing membership service built to provide education, connection and support.

Please do!

The community exists for its members. If there is something you would like Ray and Erin to cover, tell us.

Member questions and experiences will help shape future educational content, discussions and guest-speaker sessions.

Yes. Lived experience is at the heart of Don’t Sit Up.

You decide how much or how little you want to share. Nobody should ever feel pressured to disclose personal medical information.

You can contact us through the website at www.dontsitup.com, through the Community Hub or using the contact details provided with your membership.

Yes.

Whether you're struggling to log in, can't work out Telegram, can't find something in the Community Hub or simply don't know where to look, ask us.

You haven't joined a community just to be handed a password and left to figure everything out yourself.

That's rather the point of Don’t Sit Up — you're not navigating this alone.