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

  • A new SCA ..27b
    by Beryl_Park on March 25, 2023

    National Ataxia Foundation To be or SCA27B? That is the Question: Mystery ataxia cases solved by... Written by Dr. Hayley McLoughlin and Dr. Sharan Srinivasan Edited by Dr. Celeste Suart A novel genetic sequencing technology uncovered numerous familial ataxia cases linked to a unique mutation in Read More... Est. reading time: 6 […]

  • PPPD..a Vestibular issue
    by Beryl_Park on March 22, 2023

    Not all of us cope with Vestibular issues in addition to Cerebellar Ataxia …it’s like a triple whammy if eyes and ears are out of sync with the Cerebellum. Today, I discussed it with a Physiotherapist, and it was a revelation having somebody understand how difficult it is to explain symptoms. We chatted for an hour, and she outlined therapy […]

  • Spotlight: Ben’s Friends former Intern, Dr. Melissa Jones, MD
    by BF_Writer on March 22, 2023

    Sascha Gallardo – June 15, 2020 The patients who visit our sites have tons of questions on their mind related to their symptoms, which clinic to visit, the medications they are taking, and the treatment procedures they will undergo. They want a space to find answers as well as comfort from people who truly care. The Ben’s Friends team, on the […]

  • Ataxia and heart attack
    by maryseas on March 18, 2023

    Some of us Ataxians are also at risk for Heart Disease. Unfortunately when that happens women are often not taken seriously by the medical profession here in America and we sometimes don’t even recognize a heart attack. I’m including an important link to a blog written by a friend who had a major heart attack over a period of 9 weeks, went […]

  • Somatic expressions can result in earlier onset for some people
    by Beryl_Park on March 12, 2023

    Some genes naturally contain repeat sequences in the DNA. For the most part, these DNA repeats are relatively short and do not cause disease. However, when the DNA repeats expand above a certain size, they can lead to diseases. The expansion of DNA repeats is called repeat expansion mutation Somatic expansions are increases in the size of repeat […]