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Living with Erythromelalgia Patients Support Community

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Author: livingwitherythromelalgia_312j5l

Hello world!

December 27, 2022December 27, 2022 livingwitherythromelalgia_312j5l 1 Comment

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Get Connected

15 Members had joined our Patreon

Recommended Reading

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Ben's Friends Sites and Social Media

Official Ben's Friends Website
List of Ben's Friends Patient Communities
Ben's Friends Facebook
Ben's Friends Instagram
Ben's Friends LinkedIn
Ben's Friends Pinterest
Ben's Friends YouTube

Blogs

  • 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.
  • The Ripple Effect: How ADEM Impacts Patients and their Loved Ones
    Acute Disseminated Encephalomyelitis (ADEM) is a rare disorder marked by severe swelling in the brain and spinal cord. It usually The post The Ripple Effect: How ADEM Impacts Patients and their Loved Ones appeared first on News From Ben's Friends.
  • Butterfly Skin Unmasked: The Challenge of Living with Epidermolysis Bullosa
    Recognized as both “butterfly skin” and “the worst disease you’ve never heard of,” epidermolysis bullosa (EB) casts a profound impact The post Butterfly Skin Unmasked: The Challenge of Living with Epidermolysis Bullosa appeared first on News From Ben's Friends.

Testimonials



"Being able to communicate with others around the world that have EM really helps. We share tips to help us get through this difficult problem called EM. Sometimes, we can even share what medications have helped and mention that to our doctors.


Also, little things like what sandals someone can tolerate can be helpful to another person with EM.


I am truly thankful for this support group, Bens's Friends! "

--- Jewels, LivingwithErythromelalgia.

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

Sharyn

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.

Pat

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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