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Ben's Friends Sites and Social Media

List of Ben's Friends Patient Communities

Blogs

Best Ways To Interact with Hypermobile Ehlers-Danlos Syndrome Patients
Hypermobile Ehlers-Danlos syndrome (hEDS) is a rare disorder caused by genetic mutations affecting collagen, a crucial connective tissue protein. It The post Best Ways To Interact with Hypermobile Ehlers-Danlos Syndrome Patients appeared first on News From Ben's Friends.
Your Guide to Understanding the Progressive Impact of Spinocerebellar Ataxia on Patients and Families
Spinocerebellar Ataxia (SCA) is an inherited disorder that primarily affects the cerebellum, the part of the brain responsible for coordination The post Your Guide to Understanding the Progressive Impact of Spinocerebellar Ataxia on Patients and Families appeared first on News From Ben's Friends.
Know your family history: Unmasking Von Willebrand Disease’s Pervasive Impact
Executive Summary Von Willebrand Disease (VWD) is a lifelong bleeding disorder that poses both physical and social challenges. For instance, The post Know your family history: Unmasking Von Willebrand Disease’s Pervasive Impact appeared first on News From Ben's Friends.
Complex Regional Pain Syndrome: A Burdensome Journey of Relentless Pain
For some people, taking a shower, feeling the wind on their skin, or their clothes brushing their legs can bring The post Complex Regional Pain Syndrome: A Burdensome Journey of Relentless Pain appeared first on News From Ben's Friends.
The Family’s Burden: Shedding Light on the Challenges of hATTR Amyloidosis
Hereditary Transthyretin (hATTR) Amyloidosis is an inherited condition caused by mutations in the transthyretin gene, leading to the accumulation of The post The Family’s Burden: Shedding Light on the Challenges of hATTR Amyloidosis appeared first on News From Ben's Friends.

Testimonials

Finding the LivingwithAtaxia.org (LWA) site through Ben's Friends has made me feel less "alone" with ataxia!... I've learned so much about ataxia over the years being on the LWA site and hope I've helped others a bit, as I'm a ''greeter" for this site. Thank you Ben's Friends!

--- Rose1

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I’m new to the site but I was diagnosed with SCA about 10 years ago and I’m so glad I found this!! I have been struggling with a lot of difficult feelings and reading through many of the posts here have brought me to tears or made me smile because I can relate so much - it’s nice to know I’m not alone and my feelings aren’t crazy.

--- Zendejk

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Ben created this wonderful site. His Twitter feed is filled with many stories of hope over great challenges.

Ben’s Friends continues to expand this gift of love and support by creating more communities for folks sharing different great health challenges. Ben’s growing patient support sites continue to provide support with its members while new members share the challenges and share the joys. Thanks to Ben, Shalon and all the others who manage this site. It is a gift that keeps on giving.

--- Sharyn

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Your website then was my biggest support.

We met back in 2006, in Austin at St.Davids. I and my daughter, Britanny, who was then 16 years old were new to the site. Your website then was my biggest support and we came to know that so many others are struggling through very similar issues. Today Brittany is 21 and married almost a year ago. Britanny now lives here in Austin and had gone for a year in San Diego. After her gamma knife operation, we had to wait the two long years. I am so proud of YOU!!! You are such a wonderful example of turning the hurts and pains of this life into positive! May you be ever so BLESSED!!!

--- Pat

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