Living with Addison’s 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.
Addison’s disease is a disorder that occurs when your body produces insufficient amounts of certain hormones produced by your adrenal glands. In Addison’s disease, your adrenal glands produce too little cortisol and often insufficient levels of aldosterone as well. One way the body keeps itself in balance is by using chemical messengers called hormones to regulate various functions. … In Addison’s disease, called primary adrenal insufficiency, the adrenal glands don’t make enough of a hormone called cortisol, or less often, a related hormone called aldosterone.
This site is a virtual 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
Feature Article
Four Things to know to help a friend living with Addison’s Disease
Living with an autoimmune disease like Addison’s can have a huge impact on a person’s life. However, with the help of appropriate medications and proper management techniques, patients can live an active life.
Having people by their side who are willing to learn about the effects of this condition and ways to help patients can definitely make dealing with Addison’s Disease much easier.
Ben’s Friends is a network of safe and supportive online communities for individuals affected by a rare disease or chronic condition. Our Living with Addison’s Patients Support Community aims to provide online support to people affected by Addison’s Disease. If you think you would benefit from our community, we invite you to sign up here.
