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. 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.
Raynaud’s Disease (RD), also called Raynaud’s phenomenon, is a condition of the cardiovascular system in which the blood vessels contract, restricting the flow of blood, 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 intended to be a safe place for patients and family members as young as age 12, to visit 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?
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
- 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 […]
- Looking For Your Rynaud’s Disease Stories!by ModSupport on January 11, 2024
@trust_level_0 Dear Raynaud’s Support Member, For over 10 years, the Ben’s Friends online rare patient communities, run & moderated by rare patients themselves, have been a source of support for many of us, living with rare diseases. But it’s not enough. We would like more people to know about this wonderful service. To that effect, we are planning a social media campaign that will […]
- 📢 Calling mothers of children with rare diseases of all agesby ModSupport on August 12, 2023
Ben’s Friends has launched a new community for moms raising children with rare diseases and chronic conditions and we are inviting you to join Warrior Moms Living with Rare Disease Warrior Moms Living with Rare Disease Warrior Moms fighting rare diseases together. Please share the community with other families who are affected. 70% […]
- 7 Things to Look for When Choosing a Doctorby ben on May 4, 2023
Sascha Gallardo – November 1, 2022 When you are experiencing symptoms and know that something is wrong, do you settle with the first doctor you meet? Like many other patients, do you also think that doctors know everything so you should believe and simply follow everything they say? At Ben’s Friends, one of the things we always encourage our members to do is to advocate for their own health. […]
- Welcome two new users!by ModSupport on April 25, 2023
I want to wish a warm welcome to @Dogmom4ever and @jsilver @Dogmom4ever mentioned some very familiar things, including wearing oven mitts for getting things out of the freezer. @jsilver mentioned using medication to help out with the symptoms. We would love to hear more about how you manage. Sharon from ModSupport 1 post – 1 participant Read full topic
- Raynaud’s Associationby ben on April 24, 2023
The Raynaud’s Association is a national non-profit (501c3) organization whose mission is to provide support and education to the millions of sufferers of Raynaud’s Phenomenon. The Raynaud’s Association has developed working relationships with leading researchers from the National Institutes of Health, the country’s top rheumatologists who serve on the organization’s Medical Advisory […]
- About the Resources categoryby ben on April 24, 2023
Resources – contains selected list of organization that can provide other helpful materials and information about the Raynaud’s Disease. 1 post – 1 participant Read full topic
