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Lyme Disease Support Network

November 2012 - Lyme Community Newsletter


#1

Dear Friends and Family of Lyme,

The Internet is fast changing the dynamics of managing illnesses. And online patient communities, especially for rare diseases, are at the forefront of this paradigm shift.

Through the communities, the abundance of information on the Internet is being collated, validated and simplified in a way that has never been done before and most beneficially for a patient’s thorough understanding.

Where once the sole discretion for validating information is on the hands of the physician, now both patient and caregiver share in the management of their healthcare.

According to a story on NPR: “The Web has been a game-changer [for patients], connecting them to others in the same boat. They share medical information and support each other on… chat rooms, and now [even on Facebook].”

There are practical reasons why this paradigm shift is working.

First, many physicians still do not have enough understanding of some rare diseases, much less the treatment options that are available. And there are a multitude of rare diseases to study that keeping up with the information, especially considering the odds of encountering a patient with one, is simply contrary to common reason.

In such a case, a patient or caregiver with access to a group who can focus on researching on the one disease is the better resource in decision making.

Secondly, patients who belong to a rare disease support community feel more empowered and feel a more central role in their healthcare team. And that’s why this fundamental shift continues to accelerate. Compass Healthcare likens it to “the spread of democracy in a repressed society—once they have a taste there’s no going back.”

What is this paradigm shift producing? A new breed of patients. Frank McCormack, Director of the Pulmonary, Critical Care and Sleep Medicine Division at the University of Cincinnati College of Medicine, calls them ‘super patients’ as they make a physician’s job easier: “I welcome it,” he said. “In general the Internet age has enhanced physician-patient relationships.”

“People who are diagnosed with rare diseases can have a hard time finding doctors who know about their illness. They often have to become experts themselves…these ‘super patients’ are helping each other and also helping researchers to find new treatments,” says the NPR story.

Super patients… there’s a click to it, right?

Ben

IN THIS ISSUE


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Welcome New Members

BEN'S FRIENDS HIGHLIGHTS OF THE MONTH

PsA Community Reaches 1000+ Members

Ben's Friends Adopts Google Translate Feature

Ben’s Friends Chosen as Media Partner in Rare Genomics and Assay Depot Challenge

Ben’s Friends Partners with Rare Disease UK

Announcement: New URLs for ALD, CMT and ASD

LYME COMMUNITY HIGHLIGHTS

Featured Content

Featured Member

Picture of the Month

Community Stats

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Welcome New Members

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You have come to the right place! This community is powered by Ben’s Friends, a consistent top influencer on #raredisease.

Here, you will find your health questions answered by common people like yourselves, using a language understandable to you and in a personally appealing tone indicative of their sincere interest to your well-being. The Search tab on the upper right corner of every page makes finding information a breeze. Throw out what’s hounding your thoughts on the Discussion page and witness how new found friends willingly provide empowerment. And feel free to share your stories on the Blog page and your pictures and other media!

If you haven’t, subscribe to Ben’s Friends newsletter by ticking the option tab and be updated with developments within all 30+ rare disease patient communities. Here is a sample BF newsletter.

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BEN'S FRIENDS HIGHLIGHTS OF THE MONTH

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PsA Community Reaches 1000+ Members

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Our Living with Psoriatic Arthritis Support Group is the new addition to our sites with over 1000 members signed in! The community reached the milestone over the Thanksgiving weekend, giving everyone on the site more reason to be thankful, as a stronger community only leads up to more empowered members.

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Ben's Friends Adopts Google Translate Feature

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Ben’s Friends’ patient communities are fast turning into multi-lingual groups because of our global exposure. To address the need to cross the language barrier, we have started to install the Google Translate feature on every community page. Check out a sample here.

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Ben’s Friends Chosen as Media Partner in Rare Genomics and Assay Depot Challenge

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We’re delighted to be a media partner for RareGenomics and Assay Depot’s Rare Disease Science Challenge: Be HEARD – Helping Empower and Accelerate Research Discoveries in celebration of World Rare Disease Day 2013. Check out what it’s all about!
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Ben’s Friends Partners with Rare Disease UK

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Rare Disease UK is the national alliance for people with rare diseases and all who support them. RDUK is campaigning for the development and implementation of a national plan to facilitate research and improve access to services and support for people affected by rare diseases in the UK. We are elated to be chosen as their partner!

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Announcement: New URLs for ALD, CMT and ASD

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We successfully in launched alternate URLs for our ALDSupport, CMTSupport, and ASDSupport. The new URLs spell out the abbreviated names for Aderenoleukodystrophy Support, Charcot Marie Tooth Support and Atrial Septal Defect Support, respectively, to optimize their searchability in the Internet.

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LYME COMMUNITY HIGHLIGHTS

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Featured Content: Gullian-Barre? Sleep Apnea? Depression? Mono? MS? Autonomic Neuropathy? MS? LYME!!!!!

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For over 8 years of suffering from flu like symptoms, Siren finally went to remission after getting the right diagnosis and medication.

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Featured Member: Siren

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After suspecting MS for 8 years with flu-like symptoms, Siren of Hebron, KY is finally diagnosed with Lyme disease, paving the way to the right treatment and, eventually, remission.

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Picture of the Month

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Sarah shares this beautiful picture of our month.

"Dogs are not our whole life, but they make our lives whole."
-Roger Caras

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Community Stats:

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Number of Members as of November 1,2012 : 19

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#2

Ben,
I didn’t see Lyme listed on the NIH list for rare diseases. However, Babesia is included. I didn’t check for other tick co-infections. Thoughts?
Jen


#3

Jen, some of our communities aren't categorized by some groups as a rare disease. It's not something we pay much attention to, we just start communities if we learn there's a need. :)


#4

Ben,
I hope sites like this one help raise awareness and get on the radar of organizations like NIH. There is so much controversy over Lyme. That’s where I was going with my post. :slight_smile:
Thanks,
Jen