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
- Exciting Update: Double Your Impact for Rare Disease Support!by Ben_Munoz on December 13, 2024
I hope this message finds you well. As we approach the end of the year, I wanted to share an exciting update on our “Friends Helping Friends” campaign and a special opportunity to double your impact. Campaign Progress: Thanks to the incredible generosity of supporters like you, we’ve raised almost $11,000 towards our $50,000 goal. This is a fantastic start, but with just three weeks left, […]
- Nerve conduction studyby Stoney on December 11, 2024
I had gone to the hand doctor last month complaining of a lot of things and one of the specific things was carpal tunnel syndrome. I have not had a previous diagnosis of it, but there was little doubt that is what I’ve been dealing with. So today I went and had the nerve conduction study and EMG on both hands. My results are just so much fun. I do have mild to moderate carpal tunnel on my right […]
- Simponi side effects – Yeast Infectionsby tamac on December 6, 2024
Started Simponi 4 months ago. I have read that with all these biologics yeast infects can happen. I have a large place in an arm pit I thought was psoriasis coming up, but I am now think it is a yeast infection. It has several hard knots that have developed small heads of puss and the entire patch seems to have a discharge similar to a yeast infection. And now…drum roll…I have an oozing […]
- Knee Injectionsby Amos on December 5, 2024
It’s been one week since I had both knees anointed with a steroid jab. My GP pushed for it thinking that I needed a break from the pain game. So, like @Poo_therapy, always after the best interests of my physician, I said, “sure, go for it!” He looked a bit too happy for my liking but it is important to “throw the dog a bone” now and again. The injections didn’t really hurt and it was […]
- This Giving Tuesday, Make Sure No One Faces Rare Disease Aloneby Ben_Munoz on December 2, 2024
As we approach the end of the year, I’m reaching out with an urgent request on behalf of thousands of patients with rare diseases and chronic illnesses who rely on Ben’s Friends for support and connection. Our mission is critical: to ensure that no one faces a rare disease alone. Thanks to donors like you, we have recently: Redesigned our community sites for easier navigation Launched the […]
