Living with Psoriatic Arthritis 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.
Psoriatic Arthritis (PsA) is a type of inflammatory arthritis which affects people who suffer from the chronic skin condition, psoriasis. Common symptoms of psoriatic arthritis include pain, swelling, or stiffness in one or more joints that are red or warm to the touch.
Persons with psoriatic arthritis also experience pain in and around the feet and ankles, especially tendonitis in the Achilles tendon or Plantar fasciitis in the sole of the foot and in the area of the Sacrum (the lower back, above the tailbone). Changes to the nails, such as pitting or separation from the nail bed also occurs.
LivingWithPsoriaticArthritis.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
- Seenie Inspiredby Amos on May 18, 2024
While scrolling through some older posts, I saw that beautiful photo of Seenie’s dog and thought, “hey, let’s have a walk on the lighter side.” To many of us, our dogs have been a life line of fun, companionship and even distraction from our everyday PsA issues. So, let’s hear what you have as a dog friend. (please, no…”I don’t have a dog but I have cat, or rat or […]
- Psa in earby Bern on May 15, 2024
I have been bothered by recurring ear aches in right ear for 3 years. Never an infection. It gets so bad I can’t get out of bed. Sitting up makes it worse. I was finally able to get into my ENT during a bout of it. He diagnosed it as psoriatic arthritis in the ear! I was shocked. He said I’m going to lose my hearing more rapidly in that ear. Just got hearing aids in December. Oh and sometimes […]
- SI fusionby Kelcull on May 13, 2024
Hello, my sacroilitis is flaring again after getting the steroid injection. The spinal Dr is suggesting either a neurotomy or fusion of the SI joint. Has anyone had these procedurers before? Any suggestions would be appreciated. 5 posts – 3 participants Read full topic
- Hi there new and in need of helpby Flin on May 12, 2024
Hi there everyone. I’m new to the board and was hoping we could share experience of possible misdiagnosis. I live in the UK and was diagnosed with PSA about 6 years ago. The rheumatologist that diagnosed me is quite an expert in the disease (now retired) and I had all the classic symptoms – joint pain in many joints, very sore Achilles, nail pitting, sausage finger, stiffness after rest etc. I […]
- Ch ch ch changes!by Amos on May 8, 2024
Just had my 3 month rheumy appointment. She was good, basic joint check, listened well etc. Took one look at my inverse psoriasis flare and said that there was no point continuing with Simponi…even at the every 3 week dose, I was slipping in the wrong direction and 6 months is long enough. So…she thought it would be good to try something different from Humira, Rinvoq and Simponi. I have to be […]
