Welcome Members!

Welcome to Living with Erythromelalgia Patient Support Community!

Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.

This is an online support group for patients, friends and families affected by Erythromelalgia. Erythromelalgia (EM) is a rare neurovascular pain disorder that can cause redness and pain in all parts of the body, but most frequently the extremities, such as the hands and feet. It is characterized by intense burning pain, severe redness (erythema), and increased skin temperature that may be episodic or almost continuous in nature. The specific underlying cause of EM remains unknown.

Erythromelalgia may occur either as a primary or secondary disorder (i.e. a disorder in and of itself or a symptom of another condition). Secondary erythromelalgia can result from small fiber peripheral neuropathy of any cause, essential thrombocytosis (erythromelalgia can also develop in the presence of normal platelet counts in patients with myeloproliferative disorder), hypercholesterolemia, mushroom or mercury poisoning, and some autoimmune disorders. Primary erythromelalgia is caused by mutation of the voltage-gated sodium channel α-subunit gene SCN9A.

LivingWithErythromelalgia.org is a virtual peer-to-peer community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.

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How is Ben’s Friends Different from Social Media and Other Support Sites?

Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.

We’re interested in you as a person, and in your struggles as a rare disease patient.  But we don’t want to know your name or where you live. We won’t even allow you to use your real name when you register for one of our communities. Because when it comes to medical things, anonymity is important in our googly universe.  Your information is never shared, and your activity never tracked by adware.

When Ben’s Friends asks for the country and region you live in, that’s in case your fellow members can recommend local resources and help, and so everyone knows what kind of medical system there is where you live.  That’s important when it comes to giving and getting support. Because we are all about support, and we’re all in this together.. 

Ben’s Friends: Safe and Supportive. 
And anonymous to keep it that way.

Why create an account?

Posts on the different Ben’s Friends communities can be read by anyone on the internet. You can browse through the different topics and find most of the information you’re looking for but there are many things you won’t be able to do unless you create an account. These include:

Making your own posts. Although you’re able to find useful information just by reading other members’ posts, you might still have a lot of questions in your mind. Either you want to start a new topic to talk about them in detail or you want to reply to a comment on a thread. These won’t be possible unless you create a new user account.

Viewing other members’ profiles. Member profiles include information about the country or region they are from, whether they are a patient or a caregiver, and details about their disease and treatments. Maybe you came across an interesting post and you want to learn more about the member. Or maybe you’re looking for members who are from the same country as you. Having a user account allows you to see other member profiles and find information that may be relevant.  

Sending private messages. Aside from being able to post publicly and commenting on a thread, having a user account also allows you to send private messages both to other members and moderators. In case you want to discuss a topic only with a specific person, this is possible by sending private messages when you have created your account.

Click here to create an account and join.

Latest Discussions

  • Benefits of Having a Rare Disease and Chronic Illness Support Group
    by BF_Writer on February 6, 2023

    Sascha Gallardo – January 29, 2021 Having a rare or chronic illness can make a person feel isolated and lonely. They may have people who definitely care but they would constantly need to connect with someone who is going through the same things. Having people around who care is one thing, but […]

  • Once Upon a Gene podcast Features Ben’s Friends
    by BF_Writer on January 31, 2023

    Sascha Gallardo – February 22, 2021 Once Upon a Gene recently interviewed Ben Munoz about the story behind the founding of Ben’s Friends, what motivated him to embark on this journey of building online communities for rare diseases, and what ripple effect if any, does the community have on the […]

  • Ben’s Friends Lead Interns
    by BF_Writer on January 27, 2023

    Sascha Gallardo – February 1, 2021 Keeping Ben’s Friends communities safe and supportive would not be possible without the help of wonderful people who devote their time and skills to meet this objective. We have moderators who take care of their respective communities in various ways such as […]

  • Nonprofit SnapCast features Ben Munoz
    by BF_Writer on January 26, 2023

    Sascha Gallardo – February 24, 2021 Nonprofit Snapcast, a podcast that tackles nonprofit management issues, recently featured Ben’s Friends president and co-founder, Ben Munoz. The interview focused specifically on how the organization is able to do more with less. Ben explained that the main […]

  • Two Disabled Dudes Podcast features Ben Munoz
    by BF_Writer on January 18, 2023

    Sascha Gallardo – March 30, 2021 In Two Disabled Dudes podcast episode number 138, Ben shared inspiring lessons he learned from having an AVM stroke, coping with the loneliness and fear during recovery, and making the most out of life. The episode, titled We Only Have One Life to Liv‪e‬, […]

  • Reactive Hyperaemia …found on my medical.reports today 13th Dec 2023
    by anniemitchell60 on January 13, 2023

    Attended GP appointment to ask for further referral about Erythromialgia and Raynauds Due to clinic closed. Was given letter sent to my gp. I did not know this existed until I read it on my.letter. I looked it up on wikipedia. I could not find it on NHS choices Here is copy paste from wikipedia. […]

  • Red Scrotum Syndrome (RSS)
    by tedC on January 11, 2023

    Hello, I’m new to this Erythromelalgia group and I hope that someone out there has experienced my condition and hopefully has found something that has resolved it. Briefly, I can tell you that I’ve been suffering with RSS, also known as genital erythromelalgia, for over 15 months, and I’ve […]

  • Introduction new member with EM since 2005 age 69yrs.lady.Also have Raynaurds
    by anniemitchell60 on January 9, 2023

    I use to go too clinic in ninewells under vascular clinic Dr Bains, he is ill now clinic is closed down !! Why do not know, no replacement. I have been left now to deal with conditions on my own. I have Raynaurds and erythromialgia rare condition. I was on ilopross infusions for 2yrs and it made my […]

  • How Ben’s Friends moderators work as a team
    by BF_Writer on December 7, 2022

    Sascha Gallardo – September 29, 2021 Around 45,000 individuals make use of Ben’s Friends communities every month. People suffering from a rare disease are looking for information about how others like them cope. Many of them want to learn about the treatments and procedures available, as well […]

  • 4 tips on how to get the most out of your Ben’s Friends patient community
    by BF_Writer on November 22, 2022

    Sascha Gallardo – September 30, 2021 You probably have been checking a Ben’s Friends community site for a while. Maybe you have been feeling some symptoms and our site came out on your online search. Or maybe you have been diagnosed with the condition and reading other patients’ experiences […]