Welcome Members

Welcome to Living with Ataxia Community!

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.

The word “ataxia”, comes from the Greek word, ” a taxis” meaning “without order or incoordination”. The word ataxia means without coordination. People with ataxia have problems with coordination because parts of the nervous system that control movement and balance are affected. Ataxia may affect the fingers, hands, arms, legs, body, speech, and eye movements. Ataxia is often used to describe a symptom of incoordination which can be associated with infections, injuries, other diseases, or degenerative changes in the central nervous system.

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.

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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 Discussion

  • Cane suggestions
    by Parna on September 21, 2022

    I think I’ll be more confident with a cane in some situations. Can you please give me suggestions as to what to buy for us ataxians? 12 posts - 2 participants Read full topic

  • Site is very complicated
    by jericroth on September 8, 2022

    I appreciate this forum. However I find the interface very complicated and non user friendly. I am college educated and computer literate. Why so complicated? And having a “talk into this” for help makes no sense. Some of us can’t talk. HELLO. 3 posts - 3 participants Read full topic

  • Improve your balance
    by Chas521 on August 13, 2022

    brainandlife.org Exercises to Improve Balance Can Reduce Falls and Boost Confidence Poor balance is a symptom of many neurologic diseases, and people with balance problems are more likely to fall and possibly avoid social engagement. Fortunately, improving balance is possible. 8 posts - 4 participants Read […]

  • You might find a specialist for your rare disease in our Recommend a Doctor pages
    by BF_Writer on August 11, 2022

    Sascha Gallardo – November 1, 2021 Rare disease and chronic illness patients need to consult specialists or doctors who are very familiar with their condition. But especially in the case of rare patients, it’s not that easy to find someone who has many years of experience treating patients who have the same rare disease. Since Ben’s Friends […]

  • Preparing for Your Doctor’s Appointment
    by BF_Writer on August 10, 2022

    Sascha Gallardo – October 13, 2020 Getting the most out of your consultation with a doctor for a rare disease is already challenging. Now that we are also dealing with the Covid-19 pandemic, the challenge has been doubled. Considering the difficulty of getting an appointment and the risks associated with going to a hospital and being exposed to […]