Living with Raynaud’s Disease is an online patient support community that is powered by BensFriends.org, a network of patient support communities for rare diseases. Ben’s Friends provides a safe, supportive space for rare disease patients, caregivers, family, and friends to connect.
Raynaud’s Disease (RD), also called Raynaud’s phenomenon, is a cardiovascular condition that causes blood vessels to contract. This restricts blood flow, usually in the hands, feet, or both. RD occurs in up to one-third of individuals with lupus.
Lupus-related Raynaud’s usually results from inflammation of nerves or blood vessels and is triggered by stress or by cold temperatures. With Raynaud’s, the tips of the fingers or toes turn red, white, blue or purple. This may be accompanied by pain, numbness, or tingling. The lips, nose and chin may also be affected. The skin may return to a reddish color when warmth allows blood flow to return to the site.
Visit Raynaud’s Disease Patients Community.
LivingWithRaynaudsDisease.org is a virtual peer-to-peer community created for patients and family members as young as 12. It offers a safe space for information, discussion, venting, and mutual support.Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.
How is Ben’s Friends Different from Social Media and Other Support Sites?
Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.
We’re interested in you as a person, and in your struggles as a rare disease patient. But we don’t want to know your name or where you live. We won’t even allow you to use your real name when you register for one of our communities. Because when it comes to medical things, anonymity is important in our googly universe. Your information is never shared, and your activity never tracked by adware.
When Ben’s Friends asks for the country and region you live in, that’s in case your fellow members can recommend local resources and help, and so everyone knows what kind of medical system there is where you live. That’s important when it comes to giving and getting support. Because we are all about support, and we’re all in this together..
Ben’s Friends: Safe and Supportive.
And anonymous to keep it that way.
Why create an account in Living with Raynaud’s Disease?
Posts on the different Ben’s Friends communities can be read by anyone on the internet. You can browse through the different topics and find most of the information you’re looking for but there are many things you won’t be able to do unless you create an account. These include:
Making your own posts. Although you’re able to find useful information just by reading other members’ posts, you might still have a lot of questions in your mind. Either you want to start a new topic to talk about them in detail or you want to reply to a comment on a thread. These won’t be possible unless you create a new user account.
Viewing other members’ profiles. Member profiles include information about the country or region they are from, whether they are a patient or a caregiver, and details about their disease and treatments. Maybe you came across an interesting post and you want to learn more about the member. Or maybe you’re looking for members who are from the same country as you. Having a user account allows you to see other member profiles and find information that may be relevant.
Sending private messages. Aside from being able to post publicly and commenting on a thread, having a user account also allows you to send private messages both to other members and moderators. In case you want to discuss a topic only with a specific person, this is possible by sending private messages when you have created your account.
Click here to create an account and join.
Latest Discussions
- Today is Giving Tuesday. Here Are Two Easy Ways to Help Our Communityby ModSupport on December 2, 2025
Hi everyone, Today is Giving Tuesday, a day when many people look for meaningful causes to support. If you would like to help our community today, here are two simple and meaningful options. 1) Share our campaign with friends or family This is one of the most helpful things members can do. Even if you cannot donate, you can still make a big impact by spreading the word. Here are a few […]
- Our Community Is Coming Together. Here Is How You Can Helpby ModSupport on November 25, 2025
Hi everyone, As we approach the end of the year, our entire Ben’s Friends network is launching our annual community support campaign. Each forum plays an important role, so we wanted to share a few simple ways you can help strengthen this space we all rely on. Most importantly, there is never any expectation to give financially. Just being here, supporting one another, and sharing your […]
- Complementary Therapies for Raynaud’s Disease: What Works & What to Tryby ModSupport on November 13, 2025
Living with Raynaud’s Disease can feel like a constant battle against cold, stress, and circulation issues. While you’re already working with your healthcare team, complementary therapies — when used wisely — can sometimes help you feel better and reduce flare-ups. Always check with your doctor before trying something new. What the Evidence Says A meta-analysis on complementary and […]
- Winter in the northern hemisphereby stoney on November 12, 2025
Now that winter has suddenly arrived in the Northeast, what are some of your unusual tricks for keeping your hands and feet warm? Your face too? 1 post – 1 participant Read full topic
- Frequently Asked Questions About Raynaud’s Diseaseby ModSupport on November 11, 2025
1. What is Raynaud’s Disease? Raynaud’s Disease occurs when the small blood vessels in your fingers, toes (and sometimes nose or ears) spasm in response to cold or stress — cutting off normal blood flow and causing color changes. 2. What are the types of Raynaud’s? Primary Raynaud’s (also called Raynaud’s Disease): occurs on its own, without another condition causing it. Secondary […]
- Handling frozen foodsby ModSupport on December 7, 2024
Okay, here’s an odd situation. Whenever I make pizza at home, I use frozen cheese. Handling the frozen cheese more or less gives me brain freeze, to the point that I have to stop repeatedly and warm my hand up. I feel like it’s some weird neurological connection. Anyone else have anything like this? Sharon 3 posts – 2 participants Read full topic
- Research Opportunity for a Common Co-conditionby ModSupport on February 7, 2024
A clinical trial opportunity for adults living with dermatomyositis is enrolling now! If you or someone you know are an adult living with dermatomyositis symptoms despite current or prior treatment, the VALOR Study may be a good fit. The VALOR Study is testing whether the investigational medication brepocitinib, in the form of tablets taken by mouth, will improve skin and muscle problems seen in […]
