Dear Living with Ataxia Support Member,
For over 10 years, the Ben’s Friends online rare patient communities, run & moderated by rare patients themselves, have been a source of support for many of us, living with rare diseases.
But it’s not enough. We would like more people to know about this wonderful service.
To that effect, we are planning a social media campaign that will highlight the benefits of the Ben’s Friends online communities. We would like this to come directly from you, our members, to ensure the information is authentic and speaks directly to the reader.
So…we are inviting you to share with us your feedback on the platform, what makes it special, how it’s helped you, why you use it, and why others should as well.
Important note: our social media posts will be edited to avoid sharing any personal information, but will be 100% inspired by and representative of your stories.
If you are interested in contributing, please send your story as an email to firstname.lastname@example.org.
Note: by sending your story via email, you give Ben’s Friends consent to leverage some of its contents to create its social media posts, provided no patient privacy information is divulged.
Ben’s Friends Rare Disease Communities
I live in Auckland NZ and was diagnosed witrh Spinocerabellar Ataxia in 2010 when I was 64. iwas ``introduced to Bens Fiends via another Ataxia client sometime affter diagnoses and have followed it siince. I ook at all email posts I have found them interesting and helpful and also belong to the American Ataxia Foundation as well as the NZ Muscular Dystrophy Foundation.Sadly, apart from exercise and being careful there is nothing one can do as it is a progressive rare disease.Be positive.!!!
Yes…I’ve been told similar. I was diagnosed in 2011, and still Idiopathic despite having testing.
Look after yourself.
Thanks for the repl;y.Actually, I am lucky when you look around or read about the many people that are worse off than me .
Just a thought - I do know what idiopathic means - of no known cause, but what a way to describe a medical condition. I have idiopathic epilepsy and idiopathic ataxia.
I still consider myself a fairly 'normal person!!! Take care.
It is frustrating being Idiopathic
I’ve had balance issues for over 30 years, and at one point specific symptoms caused me to be diagnosed with Temporal Lobe Epilepsy. This muddied the waters for quite some time and delayed the correct diagnosis of Cerebellar Ataxia.
I too was misdiagnosed with MS for years until correctly diagnosed with SCA.
BIG +1 for this comment.
Many of what I now call ‘My oddball symptoms’ have been labelled ‘idiopathic’. I have had the joy of being given a few differing ‘pseudo diagnosis’ from psychosomatic to idiopathic in nature to hypochondriac, then (many years later) they found the cause, a nasty growing in my skull. But because those former diagnosis had been made, they are repeatedly used as a reasoning for my ongoing symptoms "ohh, but you have a history of … I also have a history of dealing with medicos who think they know EVERYTHING (They don’t) but they never identify that as a cause.
Here on the Ben’s Friends Rare conditions network we have around 50 different communities. As a member of the Modsupport Team I go through and read other’s posts and one of the most common threads is a lack of understanding by the medical fraternity of many conditions. They often try to make us fit nice and neatly into their diagnostic boxes. Any symptoms outside of those boxes are often labelled as idiopathic or unrelated.
I have in the past tried to educate/inform the medicos, but to say they are less than willing to accept would be an understatement. I tend to get a little hot under the collar when they start using such terms. I would like them to simply admit they (the medicos) don’t know why sometimes, rather than calling it ‘idiopathic’.
Merl from the Modsupport Team