If the internet revolution has passed you by and you dont know your bits from your bobs, don't worry, its never too late and we guess if you are reading this, you at least know someone who might be able to help you get started.
With a simple system, based on a low cost tablet and broadband, there are lots of things that you could well find helpful, like on-line shopping, games to challenge your mind and finger dexterity and a means to manage all your medical data. One of the more interesting opportunities though, is the ability to join a group of like minded people who understand your condition to discuss and resolve problems, share anxieties and build friendships.
There are many social networks to choose from, perhaps the best known is Facebook. We shall focus on this social network to keep things easy. It has the most active community and groups can easily be found or started.
One of the advantages of having a rare disease (Yes we did say 'advantages'!) is that the groups are smaller and more personal.
Belonging to a social network is probably one of the best choices you will make and lets face it EGPA generally doesn't give us choices!
Here are some simple steps to enable you to join a Facebook group.
Lets take the 'Churg Strauss Friends' group as an example. If you are having difficulty finding this, just type the whole name of this group into the Facebook search box, that should do it! Choose another group if you prefer or join them all - some people do.
You will notice that most groups are 'Closed'. This means that you need to request to be a member and be accepted by the group moderator. Just press the 'Join' button and explain that you have EGPA. Be prepared to wait a few days for a response though.
Then you are good to go!
There are no written rules for belonging to such a group, except common rules of decency that Facebook itself sometimes monitors. Just treat it like you would if you were meeting people in person.
As you get used to some of the interesting curved balls that EGPA throws, you will also find that you can contribute with your own experience.
Try to be brief but give information if you expecting someone to help or advise.
People are generally not rude on in such small groups but just ignore or report to the group moderator, if you feel that someone is overstepping the mark. Likewise treat others as you would like them to treat you.<< Prev    Next >>