No One Should Face a Rare Disease Alone

As most of my friends and work colleagues will know, back in 2016, I had a scary rare disease diagnosis that gave me an increased risk of having a stroke.  It felt very increased.  I got dizzier and dizzier month by month as my condition developed and before I was able to have an operation, I had a noise like the washing machine on pump-out going on in my ears once a second, twenty four hours a day. Lying flat in bed meant that I got so dizzy as to feel like Dean Martin's famous quote, "You're not drunk if you can lie on the floor without holding on."  Well, I wasn't drunk but it was very disturbing and sleep was very difficult. 

Fortunately, two things happened: I managed to find one of the Ben's Friends online rare disease support communities and I managed to have a bit of neurovascular surgery to get my risk back to that of the average fifty-something.  (The picture above is me after that surgery)

Why Ben's Friends?

Finding reliable information, finding fellowship with others going through a disease or any other hardship is an important support.  Trying to do that when you've a rare condition is made more difficult by the fact that you won't find a support group where you live. For some conditions, you're just never going to find that support anywhere other than internationally.

Ben's Friends is a collection of online support groups -- about 35 different support groups today -- that are there for people to connect peer-to-peer.  Just normal people like you and me who happen to be going through the trial of a rare disease or chronic condition.  

Healthcare in the US (and elsewhere) is expensive, so the forums are anonymous and free at the point of use. They're not based on Facebook groups because that's just too linked to who you are, who your friends are and I think that's an inappropriate place to bare your soul, to tell people about your private medical history and be emotionally open about how you're doing.

However, there are real costs associated with running these forums and I'd like to ask for your help to keep Ben's Friends communities running.  I received great fellowship and good information that helped me to rationalise the trouble I was in all those years ago and I continue to support Ben's Friends with a modest donation every month.

I am also still very active as a participant in some of the forums, making sure that new patients get at least as good a welcome as I did, good emotional support and good information about what you might expect in consultations and surgeries.  One of the support forums shows that I've dedicated 39 whole days of my life to helping others with the same condition as me deal with the rollercoaster ride!  It's worth it!  These are normal people just like me, just like you, going through their own very unwelcome challenge.

Please support Ben's Friends 

You literally never know: it could be you, aged fifty, suddenly given a diagnosis that rocks your world.  I am convinced that without my surgery I wouldn't be here today.  Without the support of the folk in my community at Ben's Friends, it would have been a much harder challenge to get through. 

You can help thousands of people across the globe make their way through their rare disease or chronic condition by making a donation to Ben's Friends today.  We need money to keep helping others. I can put the time in but honestly we do need hard cash to keep providing the support.  Please donate. 

If you'd like to learn more about Ben's Friends do ask me, or check out the website at https://www.bensfriends.org/