social support network

Hello,


I am just writing to you to say how much I enjoy the vibrancy of this forum. I am a Community Support Officer at WeAre.Us, a collection of social support networks for patient communities such as Crohn's Disease, Lupus, Fibromyalgia etc. Like you we focus on providing a platform where patients can find information and discuss issues relating to their condition with other like minded individuals. My good friend has Crohn's and she inspired us to create WeAreCrohns.org. We want to spread the word to the community about all of the resources available to people with these life shaping illnesses. With this in mind, having read through some of the great information on this forum, I am positive our users could really benefit from some of the discussions etc. I will start to mention your site on WeAre.Us. Please have a look and it would be great to have your opinions/thoughts - it gives us an idea about how we can make the sites better for the community.

Thanks for your time,

Regards,

Juliette

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Support and networking NEW
by: Annette

Hello,

Thank you for your post. It's important that there is as much help and communication out there for Crohn's sufferers as well as for many other conditions so I am pleased to hear of another support network.

It can be a terrifying time for those who are newly diagnosed and who are often experiencing a great deal of pain. They don't know what lies ahead for them health-wise, they are often worried about money or their jobs too. It can seem like wandering alone through a dark tunnel where there is no definitive answers for how to cope with the disease. All they know is that there is currently no cure so it can seem like a life sentence.

Communication is absolutely vital. The more sufferers can talk to each other and learn more about how the disease affects others, the more able they will be to fight back.

We receive many questions from people who simply want to know the true outcome of the disease or if they can claim benefits or whether alternative remedies can help. Some are angry at treatment by medical professionals, others have found a way to embrace their condition and to live a whole life adapting to Crohn's in a positive way but, in a nutshell, the majority of people are very frightened and need support.

Support is not sadly always given at the time of diagnosis due to time restraints. Research is often left to the patient to undertake themselves and this is difficult when they are fighting fear and anxieties which of course can make the condition much worse.

I wish you much luck with your forum and hope that you are able to reach out and help people. Please do spread the word about us, as our goals are the same, we wish to help and provide support to all who need it.

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